Alzheimer’s Disease Demonstration Grants to States Program: Washington
Prepared by David Brown, M.A. Marc Freiman, Ph.D. Joshua M. Wiener, Ph.D. RTI International Health, Social, and Economics Research 701 13th Street, NW, Suite 750 Washington, DC 20005
RTI Project Number 0209351.003.008
ALZHEIMER‘S DISEASE DEMONSTRATION GRANTS TO STATES: WASHINGTON David Brown, M.A. Marc Freiman, Ph.D. Joshua Wiener, Ph.D.
AoA Project Officer: Donald Grant
RTI International Contract No. GS-10F-009L MOBIS Delivery Order No. HHSP233200400143U November 2008
This project was funded by the U.S. Administration on Aging under contract number GS-10F009L MOBIS, Delivery Order No. HHSP233200400143U. This report is a product of the Alzheimer‘s Disease Demonstration Grants to States National Resource Center. The statements contained in this report are solely those of the authors and do not necessarily reflect the views or policies of the U.S. Administration on Aging or RTI International. RTI assumes responsibility for the accuracy and completeness of the information contained in this report. The authors would like to thank the ADDGS Grant staff, other state officials, providers, consumers, researchers, educators, and others who gave so generously of their time to provide information about Grant activities.
RTI International is a trade name of Research Triangle Institute.
ACKNOWLEDGMENTS The authors would like to thank the ADDGS Grant staff, other state officials, providers, consumers, researchers, educators, and others who gave so generously of their time to provide information about Grant activities.
CONTENTS Page EXECUTIVE SUMMARY .............................................................................................................1 SECTION 1: INTRODUCTION: OVERVIEW OF ADDGS PROGRAM AND CASE STUDIES ................................................................................................................................3 SECTION 2: OTHER ALZHEIMER‘S CARE SERVICES IN WASHINGTON .........................6 SECTION 3: THE WASHINGTON ADDGS GRANT .................................................................7 Key Partners ............................................................................................................................7 Overview of Key Elements of the Washington ADDGS Grant Project .................................8 Local Dementia Partnerships ..................................................................................................9 Structure of the Local Dementia Partnerships ..................................................................9 Activities and Accomplishments of the Local Dementia Partnerships ...........................10 Memory Care and Wellness Services and EnhanceFitness ..................................................11 Memory Care and Wellness Services .............................................................................12 EnhanceFitness ...............................................................................................................16 Dementia Family Support Consultation................................................................................19 Activities and Accomplishments of Dementia Family Support Consultation ................20 Evaluation of the Dementia Family Support Consultation .............................................21 Family Caregiver Counseling ...............................................................................................21 Activities and Accomplishments of Family Caregiver Counseling ................................22 Evaluation of Family Caregiver Counseling...................................................................23 SECTION 4: STRATEGIES FOR SYSTEMS CHANGE AND SUSTAINABILITY ...............24 Integration of Grant Activities with Existing Organizations ................................................24 State Support for Ongoing Caregiver Supports ....................................................................25 SECTION 5: CONCLUSION .......................................................................................................27 REFERENCES ..............................................................................................................................29
Appendices A: B: C: D: E: Seattle/King County Dementia Partnership Referral Graphic ........................................... A-1 Dementia Day Services Standards and Recommendations ................................................B-1 Dementia Day Services Evaluation Project Referral Protocol ...........................................C-1 Dementia Family Support Consultation Service Guidelines and Requirements ............... D-1 Family Caregiver Counseling Service Guidelines and Requirements ................................ E-1
List of Exhibits ES-1 Main Components of the 2005–2008 Washington ADDGS Grant ........................................1 ES-2 Principal Findings from the Washington Case Study .............................................................2 1 2 3 Main Components of the 2005–2008 Washington ADDGS Grant ........................................4 Principal Findings from the Washington Case Study .............................................................5 Local Dementia Partnerships and Members .........................................................................10
EXECUTIVE SUMMARY The Washington Alzheimer‘s Disease Demonstration Grants to States (ADDGS) grant project has operated since 2005 to expand supports for people with Alzheimer‘s disease and their caregivers. The grant has an integrated approach with four components as described in Exhibit ES-1. Exhibit ES-1 Main Components of the 2005–2008 Washington ADDGS Grant Local Dementia Partnerships under the leadership of Area Agencies on Aging that foster communication among organizations serving caregivers of clients with Alzheimer‘s disease and other dementias. Memory Care and Wellness Services, a dementia day services approach employing evidencebased interventions including EnhanceFitness, an exercise program adapted for clients with Alzheimer‘s disease. Dementia Family Support Consultation services to educate family caregivers and support them in care planning. Family Caregiver Counseling services to provide evidence-based, brief therapy for caregivers with mental health issues or problematic family relationships.
The Local Dementia Partnerships coordinate the other grant components and conduct outreach and training. The grant has established two Dementia Partnerships—the Seattle/King County Area Agency on Aging is leading the Dementia Partnership serving the urban Seattle region, while the Northwest Regional Council Area Agency on Aging leads the Dementia Partnership serving rural Skagit and Whatcom counties in northwest Washington. Other key partners are the Western and Central Washington State Chapter of the Alzheimer‘s Association, the Alzheimer Society of Washington, and local adult day services providers. The Memory Care and Wellness Services intervention pairs the EnhanceFitness exercise program with other evidence-based programs and promising strategies to promote positive and supportive interactions with program participants, providing an enriched program of activities for persons with Alzheimer‘s disease. The staff at participating adult day services providers also supports caregivers with guidance and referrals. Dementia Family Support Consultation and Family Caregiver Counseling provide caregivers with personalized support services. Through the consultation intervention, caregivers learn techniques to provide effective care while maintaining their own well-being. The counseling intervention provides individualized therapeutic interventions for caregivers whose personal problems prevent them from functioning effectively in the caregiver role. The Washington ADDGS grant is conducting an extensive evaluation of these interventions. One study is measuring the impact of Memory Care and Wellness Services on both caregivers and the persons with Alzheimer‘s disease attending the program. A separate
study, independent of the project evaluation, is tracking how EnhanceFitness affects the physical abilities of participants. To evaluate the Consultation and Counseling interventions the grant will use data from a goal attainment instrument developed by the grant. Grant leaders and partners expect these interventions to continue in some form at the conclusion of the grant. The partner organizations report that they find these activities attractive as means for supporting caregivers, and that the Dementia Partnerships provide an institutional framework for continued cooperation between caregiver support organizations at the local level. The state has also expressed support for caregiver services—the legislature provides funding for caregivers, and the legislative long term care task force has made family caregiving one of its priorities. The State Unit on Aging is making plans to incorporate ADDGS interventions into its ongoing programs. The principal findings of this study are presented in Exhibit ES-2. Exhibit ES-2 Principal Findings from the Washington Case Study The Washington ADDGS grant project provides support for caregivers and persons with Alzheimer‘s disease through a coordinated program of local services. The project: Demonstrates the potential of Local Dementia Partnerships to increase access to services for persons with Alzheimer‘s disease and their families by developing and enhancing communications between service organizations and providers. Enhances the dementia-competence of service organizations and providers serving persons with Alzheimer‘s disease and their families by disseminating existing educational resources and developing new training opportunities. Provides a demonstration of the potential for a dementia-specific day services program to enhance the overall health and well-being of caregivers as well as persons with Alzheimer‘s disease and other dementias. Conducts a demonstration of the practicality of EnhanceFitness as a group exercise intervention within a dementia-specific day services program, and its potential to produce positive effects for participants. Provides support to caregivers in urban and rural settings in promoting their personal well-being, maintaining a positive caregiving experience, and enabling family members with Alzheimer‘s disease and other dementias to remain in the community. Supplies therapeutic support intervention services to caregivers with stress, mental health, or family problems to assist them in maintaining a stable family setting for the person with Alzheimer‘s disease.
SECTION 1 INTRODUCTION: OVERVIEW OF ADDGS PROGRAM AND CASE STUDIES Alzheimer‘s disease is a devastating degenerative disease that causes memory loss, challenging behavior problems, and severe functional limitations. A person with late-stage Alzheimer‘s disease requires constant supervision, support, and hands-on care. Although many people with Alzheimer‘s disease are admitted to nursing homes, the majority live in the community where their families provide most of their care. To improve services to persons with Alzheimer‘s disease, Congress established the Alzheimer‘s Disease Demonstration Grants to States (ADDGS) program, which is administered by the U.S. Administration on Aging. The program‘s mission is to ―expand the availability of diagnostic and support services for persons with Alzheimer‘s disease, their families, and their caregivers, as well as to improve the responsiveness of the home and community-based care system to persons with dementia. The program focuses on serving hard-to-reach and underserved people with Alzheimer‘s disease or related disorders‖ (U.S. Administration on Aging, 2006). The ADDGS program addresses how to deliver effective services to persons with Alzheimer‘s and other dementias and their caregivers, especially to underserved and hard-toreach populations. The purpose of the ADDGS program is to enhance the ability of states to provide the services and supports needed to sustain the community-based Alzheimer‘s disease care system. The program does this in two ways: by demonstrating innovative service models of Alzheimer‘s services that can be replicated in the community; and by stimulating systemic change to increase the responsiveness of states‘ long-term care systems to the needs and preferences of persons with dementia and their families. This report is one of four case studies conducted by the ADDGS National Resource Center in 2007 on the activities of selected state programs.1 The goals of the case studies are: To document ―promising practices,‖ To identify policy issues relevant to providing services to people with Alzheimer‘s disease and their families, To identify implementation barriers and ways of overcoming them, and To assess how selected states are addressing the goals of the ADDGS program.
Washington was chosen for study because of the interaction between the ADDGS programs, the National Family Caregiver Support Program, and the state‘s Adult Day service providers in developing infrastructure. The Washington ADDGS program uses an integrated,
1 The other case studies are an examination of the Nevada ADDGS grant; a cross-state analysis of programs focused
on rural/frontier populations, and a cross-state assessment of how ADDGS programs cooperate with the National Family Caregiver Support Program.
locally-based approach to provide support services for caregivers and persons with Alzheimer‘s disease. The major elements of the grant are described in Exhibit 1. Exhibit 1. Main Components of the 2005–2008 Washington ADDGS Grant Local Dementia Partnerships under the leadership of Area Agencies on Aging that foster communication between organizations serving caregivers of clients with Alzheimer‘s disease and other dementias. Memory Care and Wellness Services, a dementia day services approach employing evidencebased interventions including EnhanceFitness, an exercise program adapted for clients with Alzheimer‘s disease. Dementia Family Support Consultation services to educate family caregivers and support them in care planning. Family Caregiver Counseling services to provide evidence-based, brief-therapy for caregivers with mental health issues or problematic family relationships
The Local Dementia Partnerships coordinate local grant activities in two regions of the state. The Seattle/King County Dementia Partnership serves the urban Seattle region. The Northwest Regional Council Dementia Partnership serves rural Skagit and Whatcom counties in northwest Washington. Partnership members include adult day care and adult cay health care providers and the state‘s Alzheimer‘s organizations. The Memory Care and Wellness Services intervention includes activities to improve the overall quality of life for caregivers as well as persons with Alzheimer‘s disease. In addition to EnhanceFitness, Memory Care and Wellness uses promising and evidence-based methods to provide positive and supportive activities for program participants. The day services staff works with caregivers to develop the care program for the participants, and supports caregivers with guidance and referrals. Dementia Family Support Consultation and Family Caregiver Counseling are the other two components of the grant. Dementia Family Support Consultation assists caregivers in fulfilling the caregiver role while maintaining their personal well-being. Family Caregiver Counseling provides an individualized therapeutic intervention for caregivers with personal problems that prevent them from functioning effectively in the caregiver role. The Washington ADDGS grant is conducting an extensive evaluation of these interventions. A comparison group study is underway to measure the impact of Memory Care and Wellness Services on both caregivers and the persons with Alzheimer‘s disease participating in the program. A separate study is tracking how EnhanceFitness affects the physical abilities of participants. The evaluation of the consultation and counseling interventions will use data from a goal attainment instrument developed for this project. The principal findings of the Washington case study are presented in Exhibit 2.
Exhibit 2. Principal Findings from the Washington Case Study The Washington ADDGS grant project provides support for caregivers and persons with Alzheimer‘s disease through a coordinated program of local services. The project: Demonstrates the potential of Local Dementia Partnerships to increase access to services for persons with Alzheimer‘s disease and their families by developing and enhancing communications between service organizations and providers. Enhances the dementia-competence of service organizations and providers serving persons with Alzheimer‘s disease and their families by disseminating existing educational resources and developing new training opportunities. Provides a demonstration of the potential for a dementia-specific day services program to enhance the overall health and well-being of caregivers as well as persons with Alzheimer‘s disease and other dementias. Conducts a demonstration of the practicality of EnhanceFitness as a group exercise intervention within a dementia-specific day services program, and its potential to produce positive effects for participants. Provides support to caregivers in urban and rural settings in promoting their personal well-being, maintaining a positive caregiving experience, and enabling family members with Alzheimer‘s disease and other dementias to remain in the community. Supplies therapeutic support intervention services to caregivers with stress, mental health, or family problems to assist them in maintaining a stable family setting for the person with Alzheimer‘s disease.
Information for this case study was gathered by reviewing Web sites and administrative files at the U.S. Administration on Aging and by conducting an in-person site visit in August 2007 in Olympia and Seattle, Washington. As part of the site visit, RTI staff interviewed ADDGS staff, state officials, research experts, providers, consumer groups, and others.
SECTION 2 OTHER ALZHEIMER’S CARE SERVICES IN WASHINGTON Washington has provided formal services to caregivers through state funded programs and a previous ADDGS grant, as described below. Washington State Respite Care Program, 1989 to date. Since 1989 Washington has provided a State Respite Care Program for unpaid informal caregivers, including family members, who are caring for adults (age 18+). Using state general funds, the program offers assistance in finding respite care, primarily in-home care, and designates 70 percent of the appropriated funds for purchasing respite service. The State Unit on Aging administers program funding through the Area Agencies on Aging. For FY 2007, the state legislature appropriated $2,989,000 for the program. Washington ADDGS Grant, 1993 to 2000. This ADDGS grant funded adult day care, inhome respite, dementia education, and client advocacy. The grant program used a partnership approach linking Area Agencies on Aging with Alzheimer‘s service organizations and local ethnic community agencies. Four projects in different areas of the state worked with the Chinese, Korean, Hispanic or Native American population to build the capacity of local communities to provide culturally appropriate respite care and supportive services. Support services developed under the grant included: an Asian adult day care program in Tacoma, targeting Asian/Pacific Islanders; a Dementia Support Center in Seattle, targeting the Chinese community; a Native American outreach coordinator and caregiver support group in the rural northwest region of Washington; and a client advocate program in Seattle to promote the use of adult day services by the Spanish-speaking community. Under the client advocate program bilingual/ bicultural individuals were trained in dementia care and provided support to families facing cultural barriers in accessing caregiver supports. Washington Family Caregiver Support Program, 2001 to date. Enacted by the state legislature in 2000, the state-funded Family Caregiver Support Program is similar to the National Family Caregiver Support Program in providing services to unpaid family caregivers of adults (age 18+). Program services are similar to the national program, although the state program does not support caregiver counseling. State funding was $644,000 for FY 2007, and is administered by the State Unit on Aging through the Area Agencies on Aging.
SECTION 3 THE WASHINGTON ADDGS GRANT The current ADDGS grant is administered by the Washington State Unit on Aging, based in the Washington Aging and Disabilities Services Administration. This Administration oversees the state‘s major long-term care and supportive service programs for adults and seniors with disabilities and funds or regulates adult day services, case management, information and assistance, family caregiver support, respite for caregivers, and training for community-based and family caregivers. The grant focuses on providing services to caregivers, with the goal of improving the quality of life for both caregivers and persons with Alzheimer‘s disease or other dementias. Building on the partnership experience gained by the state in its earlier ADDGS grant, the current grant provides caregiver support through dementia-competent adult day services, consultation services, and counseling support. Key Partners An array of stakeholder partners supports the Washington ADDGS project with their expertise in dementia services, assisting in the implementation of grant activities and taking part in the state level advisory committee that was convened at the outset of the grant to guide program design, policy and implementation. Key stakeholders with the State Unit on Aging are: the Western and Central Washington State Chapter of the Alzheimer's Association; the Alzheimer Society of Washington; the Washington Association of Area Agencies on Aging; the Washington Adult Day Services Association; and the Northwest Research Group on Aging from the University Of Washington School Of Nursing. Other stakeholders who participated in the early stage of the grant in identifying gaps and service needs include the University of Washington Alzheimer‘s Disease Research Center, Lifespan Respite Coalition, the Western Washington Area Health Education Center, ethnic organizations, and individual providers. The Washington Aging and Disabilities Services Administration and the other implementation partners are briefly described below. The State Unit on Aging is also assisted by other units of the Aging and Disabilities Services Administration. The Home and Community Services Division of the Aging and Disabilities Services Administration includes programs that help the State Unit on Aging implement the ADDGS grant. The Training, Communications, and Development Unit, which employs the ADDGS grant director, is generally responsible for leading development efforts related to dementia and supported the development of Washington‘s Family Caregiver Support Program. The Training, Communications, and Development Unit also coordinates annual family caregiver conferences and cooperates with the grant to make training opportunities available for family caregivers and adult day services staff. The Home and Community Programs unit administers the long term care part of the state plan Medicaid Home and Community-Based Services program, funding adult day services and other caregiver supports. Home and Community Programs also regulates state adult day service programs, and has helped develop the grant dementia day care program. The Western and Central Washington State Chapter of the Alzheimer's Association is one of seven founding chapters of the National Alzheimer's Association. The Chapter serves 7
individuals living with Alzheimer's disease and other dementias, their families, health care professionals and administrators, and the general public throughout a 23 county service area from Canada to the Oregon border. The Alzheimer Society of Washington, an affiliate of the Alzheimer‘s Foundation of America, is an organization of volunteers, family and friends of persons affected by Alzheimer's disease and other dementias that serves people through the state. Its purposes are: to reach persons affected by dementia with support, knowledge and resources; to develop public awareness of the devastation caused by dementia; and to improve the social and health systems serving those affected by dementia. Senior Services of Seattle/King County is a non-profit organization assisting older adults in Seattle and King County to access community services. Services available through Senior Services include caregiver support, adult day service, senior centers, nutrition programs, home repair services, support groups, and transportation. The Washington Association of Area Agencies on Aging is a membership organization made up of the 13 Area Agencies on Aging in Washington State. The organization works to enhance the effectiveness of Area Agencies on Aging by providing a forum for information, debate, advocacy, and education. The Washington Adult Day Services Association is the coalition of adult day centers in Washington, working to increase access to quality, available, accessible cost-effective adult day services in the state. The goals of the organization are to: provide comprehensive social and health care support to those living with chronic illness; supply caregivers with accurate information about long-term care and other supportive services; support formal and informal family caregiving; and encourage aging in place. The Northwest Research Group on Aging is a behavioral and clinical research organization that focuses on older adults with dementia and their caregivers. This group conducts research, teaching, and community programs aimed at improving quality of life for older adults, with an emphasis on Alzheimer's disease. It is based in the School of Nursing of the University of Washington. Overview of Key Elements of the Washington ADDGS Grant Project In designing the Washington ADDGS grant project, the State Unit on Aging focused on the needs of the state‘s dementia caregivers. The state has a substantial number of dementia caregivers—after the implementation of the state caregiver support program and the National Family Caregiver Support Program in 2001, the Area Agencies on Aging found that 40 to 45 percent of the caregivers being assisted were caring for people with dementia. The ADDGS grant addressed remaining gaps in the state caregiver service infrastructure: too little linkage among the existing caregiver support programs, resulting in inefficient use of existing programs; a declining number of adult day respite facilities despite growing need for dementia-competent adult day services; and insufficient access to individualized, dementia-specific caregiver supports.
To address these gaps, the grant proposed a pilot intervention with four components: Local Dementia Partnerships Memory Care and Wellness Services Dementia Family Support Consultation Services Family Caregiver Counseling Services
Local Dementia Partnerships Dementia Partnerships link existing dementia caregiver support programs to improve access and utilization of support and respite care services by family caregivers of persons with Alzheimer‘s disease. Under the leadership of a local Area Agency on Aging, the partnership is responsible for coordinating the other major grant activities. Structure of the Local Dementia Partnerships The partnerships include—at a minimum—representatives from: The Area Agency on Aging and its Family Caregiver Support Program, The local Alzheimer‘s disease-specific organization, and Participating day services providers.
As a team, the partners develop a system that provides Alzheimer‘s disease caregivers and care receivers with unified access to dementia-competent services and minimizes barriers to service use. The partnership team implements activities which: provide education for caregivers; create awareness among caregivers of the services available through the members of the partnership; and assist caregivers in accessing partnership services. They also conduct crosstraining activities among the partner organizations. The required partnership activities are: At least one educational workshop related to dementia per quarter, At least one outreach program in year 1 of the grant targeted to people with earlier stage memory loss and their families, and 2 such programs in years 2 and 3, and At least one evidence-based caregiver workshop series per year in years 2 and 3 (e.g. Powerful Tools for Caregiving).
The ADDGS project selected two local Dementia Partnerships in January 2006, through a request for proposal issued to all the state‘s Area Agencies on Aging. The two partnerships are led by: Aging and Disability Services, the Area Agency on Aging serving King County, including Seattle. The Northwest Regional Council, the Area Agency on Aging serving northwest Washington, including Island, San Juan, Skagit, and Whatcom counties.
Exhibit 3 summarizes the partnerships and their key members: Exhibit 3 Local Dementia Partnerships and Members Partnership Name King County Dementia Partnership Service Area King County, including Seattle Northwest Regional Council Dementia Partnership Skagit and Whatcom Counties Partners Aging and Disability Services ElderHealth Northwest Alzheimer‘s Association Western and Central Washington State Chapter Geriatric Regional Assessment Team Senior Services of Seattle/King County Kin On Community Health Care Northwest Regional Council Skagit Adult Day Care St. Joseph Adult Day Health Care Alzheimer Society of Washington
Activities and Accomplishments of the Local Dementia Partnerships Seattle/King County Partnership The Seattle/King County partnership, building on the existing billing and administrative systems of the Area Agency on Aging, has developed a ‗no wrong door‘ system of referrals among the grant partners for the services they provide. Referrals from the partners are processed by the Area Agency on Aging, which developed systems to evaluate families for referral to Memory Care and Wellness Services, consultation services, and counseling services, and manages the enrollment process. Families referred to Memory Care and Wellness Services are also referred to the University of Washington evaluation team where they receive a second screening to determine whether they are eligible for participation in the evaluation of the intervention (See the full referral graphic in Appendix A). The partnership has been active in promoting grant services. Information about grant programs has been disseminated through public information presentations, newsletters, flyers, and public social events for individuals with Alzheimer‘s disease and their caregivers. Partnership outreach efforts have also produced newspaper coverage of grant activities. Educational and outreach events for family caregivers offered by the partnership have included: Journey through Memory Loss and other presentations by the Alzheimer‘s Association Chapter, including events targeted at African-American and Chinese caregivers; training in memory loss and dementia caregiving; and a locally produced video about Alzheimer‘s disease. A partnership workshop on legal and financial issues for caregivers in March 2007 drew 45 attendees and produced referrals for all elements of the grant project. An outdoor ―Sweet
Summer Night‖ social/educational event in July 2007 provided programs for both people with dementia and caregivers. The partnership program of cross-training for participating organizations has included trainings on: counseling, provided by the Geriatric Regional Assessment Team, the referral process, provided by the Area Agency on Aging; dementia and caregiving issues, provided by Senior Services; and ambulation and transfers, provided by an ElderHealth occupational therapist. The Alzheimer‘s Association Chapter has also consulted with ElderHealth staff on individual participants. Northwest Regional Council Partnership The Northwest Regional Council partnership has directed its coordination efforts to the development of a service network for its widely-dispersed target rural population. The council provides program support for partnership referrals, drawing on its regional organization and the expertise of its family caregiver support specialists. In order to be closer to the population in need, the Area Agency on Aging maintains a network of local offices that can pass inquiries to the family caregiver staff. As in the King County partnership, the Northwest Regional Council program staff has developed the forms, definitions, and procedures needed to integrate grant services into the existing Area Agency on Aging referral structure. For educational and outreach programs, the Northwest partnership draws heavily on the expertise of the Alzheimer Society of Washington. The Society has master trainers for Powerful Tools for Caregiving, and that program was presented three times in the first year and a half of partnership operations. The Society also presented an educational conference for caregivers in May 2007, and the partnership used grant funds to provide respite care for caregivers attending the conference. Additionally, the Aging and Disability Services Administration and the day services providers have held educational events for caregivers during times that their family members with Alzheimer‘s were attending day services. The Alzheimer Society of Washington was also active in the cross-training program conducted by the partnership for its members, providing classes on using the Mini-Mental State Examination. Other partnership cross-training programs included a neuropsychologist speaking on ‗Techniques for Interviewing People with Dementia‘ and an Aging and Disability Services Administration training session for staff of the partnership organizations. Memory Care and Wellness Services and EnhanceFitness Memory Care and Wellness Services is the grant‘s dementia-competent model to augment the existing adult day services models in the state. EnhanceFitness is the exercise component of Memory Care and Wellness Services. Washington has two types of adult day services: adult day care and adult day health care. The typical ratio of staff support for clients in both services, outside of the Memory Care and Wellness Services program, is 1:6 and the typical day of care is four hours long.
Memory Care and Wellness Services The Memory Care and Wellness Services model includes enhanced dementia-competent activities for participants with Alzheimer‘s and an enhanced level of support for family caregivers. Research by Zarit (1998) demonstrated that the use of adult day services by persons with Alzheimer‘s disease and other dementias brings positive psychological benefits for family caregivers, including lower levels of caregiver related stress and depression. Building on this research, Memory Care and Wellness Services is designed to improve the quality of life for Alzheimer‘s caregivers as well as for persons with Alzheimer‘s disease. The Standards for the ADDGS Memory Care and Wellness Services program were developed cooperatively by the Aging and Disabilities Service Administration, the Alzheimer‘s Association Chapter, the Alzheimer Society of Washington, the Washington Association of Area Agencies on Aging, the Northwest Research Group on Aging, the Washington Association of Adult Day Services, and individual adult day service providers. The standards are in Appendix B, and some key elements are: A staffing ratio of 1:4. In-depth and ongoing dementia care training for staff. Enhanced professional staffing, including social services, nursing, and occupational/speech therapy. A program operating at least two days a week, and at least five hours per day. Assessment and care planning for both the caregiver and participant. A program of specialized activities and exercise for participants. Involvement of the caregiver in care planning for the participant. Caregiver support, including information and referral services.
The day care service partners in each dementia partnership are expected to serve at least 25 client/caregiver dyads per year, providing each dyad with two 5-hour days of dementia day care service per week. Memory Care and Wellness Services is financed by ADDGS through grant funds and state matching funds. Adult day services providers receive a higher level of funding for Memory Care and Wellness Services participants to enable the providers to provide a more intensive level of care and longer day. Some of the participants in Memory Care and Wellness Services are covered by Medicaid, and for those participants ADDGS provides supplemental funding above the Medicaid daily adult day care and adult day health care rates. With the approval of the state plan Medicaid HCBS program, ADDGS makes supplemental payments directly to day services providers for each participant receiving Memory Care and Wellness Services. The rates vary based upon location of the provider, and reflect the differing costs of providing services in urban and. rural service areas. ElderHealth receives a total daily reimbursement of $63.70 for each Memory Care and Wellness Services participant, while Skagit and St. Joseph each receive a total daily reimbursement of $57.58 for each participant.
Activities and Accomplishments of Memory Care and Wellness Services The implementation of Memory Care and Wellness Services has been a learning experience for participating adult day services providers. ElderHealth Northwest and St. Joseph were somewhat familiar with the needs of participants with Alzheimer‘s disease since each had previously operated a structured dementia day services program within their adult day health centers. Skagit had some experience serving people with dementia in its adult day care program, but had no experience in providing nursing and occupational therapy services. All of the providers had the challenge of providing Memory Care and Wellness Services to some participants while at the same time continuing to provide their existing program to other participants. Incorporating a coordinated approach to family caregiver support into their case management activities was a new experience to all the providers as well. Grant leadership and adult day service providers report that it took about seven months to fully implement the Memory Care and Wellness Services program. Providers faced a number of issues: Skagit‘s transition to staffing for dementia-competent adult day service was the most difficult of the three providers because it had not previously provided nursing care or other clinical services. Skagit procured the needed staff, hiring a nurse and contracting with nearby United General Hospital for the services of occupational and speech therapists. However, the lack of clinical services in the Skagit program meant that there was no system of standard procedures and documentation in place to define the role of nursing and clinical personnel in the Skagit organization. Additionally, the clinical personnel were unfamiliar with adult day care procedures. Technical assistance from the Aging and Disability Services Administration and the grant, along with peer support from the St Joseph program, was needed for Skagit to develop guidelines and integrate clinical services into its program. Turnover in key positions has been a problem for all providers, disrupting operations and requiring continued support from the grant to train new staff and integrate them into the Memory Care and Wellness Services program. One particularly serious loss was the death of the St. Joseph program director in spring 2007. Providers also report that occupational therapists are in particularly short supply in the state—ElderHealth lost an occupational therapist in spring 2006, and the search for a replacement took over two months. Scheduling has also been an issue for all the providers. The state regulatory minimum standard for day services is a four-hour day, while the Memory Care and Wellness Services program requires a five-hour day. Initially, the providers planned to extend the service day one hour later for the Memory Care and Wellness Services program, but found that having other participants leaving while grant participants remained was disquieting for the grant participants. After discussions with Aging and Disability Services Administration staff, and varied experiments with scheduling, the centers‘ schedules have been adjusted to meet the needs of participants. St. Joseph, for example, begins Memory Care and Wellness Services an hour earlier than the regular day program. Participants have been more comfortable with this approach, and staff members have been able to provide more support to grant participants during the first hour before participants in the existing day services program arrive. 13
At the ElderHealth program, the first Memory Care and Wellness Services participants enrolled in the grant program were high functioning, and they were averse to being in a dementia group. Initially, after consultation with grant leadership, ElderHealth included these participants in its general program. After further deliberations with grant leadership, however, a separate group was developed for high functioning participants using an early stage memory loss support group curriculum provided by the Alzheimer‘s Association Chapter. In the rural Northwest partnership, long travel distances limit access to day services for the rural population of those counties. Some participants who attend Memory Care and Wellness Services come a great distance, up to an hour‘s drive each way. The partnership has not been able to develop a solution for the limitation that distance is placing on the availability of day services and Memory Care and Wellness Services, although providers have discussed instituting a day services program that would move among rural towns on a regular schedule.
Adult day services providers and grant leadership have worked closely to develop staff dementia competency for Memory Care and Wellness Services and maintain fidelity to the program. The ADDGS grant provided for initial training and ongoing technical assistance for the day services programs, focusing on the incorporation of wellness activities for the participants, the inclusion of caregiver needs, and the development of individualized plans for participants and caregivers. With the assistance of the Aging and Disability Services Administration, the grant has also developed an ongoing program of staff education including quarterly planning meetings for staff of all three participating facilities to review the program standards of care and provide training and technical assistance. Aging and Disability Services Administration staff has provided a self-evaluation checklist for providers to use in identifying training and support needs. Grant and Aging and Disability Services Administration personnel also visit and consult with the providers on-site. The grant also arranged for professional training to support the use of promising and evidence-based practices in Memory Care and Wellness Services sites. Trainings included Montessori-Based Activities for People with Dementia and Time Slips storytelling techniques. The Aging and Disability Services Administration made this training available to adult day service provider staff as it was being provided for staff of the state Specialized Dementia Care Program in Boarding Homes. Montessori-Based Activities for People with Dementia has introduced a range of new strategies and activities that have led to increased levels of participation, including involvement by participants who had previously resisted group activities. These new activities include sensory experiences matching sound and touch, practicing preparing a snack with staff supervision, memory association ‗bingo‘ sessions, and a reading activity in which participants read out loud and interact with each other and the leader. Time Slips is a group process that engages the imagination of people with cognitive impairment in a creative effort. In a group setting, the leader asks open-ended questions about a photograph or other image and uses the responses from each participant, weaving them into a story which is written on a board for the group to see.
This training has inspired the day services staff to bring in other community resources. The Skagit program, for instance, recruited a local artist to organize painting classes, and provided music for the participants. St. Joseph‘s has organized a bell choir. Day services program staff express enthusiasm at the results of these interventions. They report that even participants with advanced Alzheimer‘s disease are able to participate somewhat in the Montessori and Time Slips activities. In one case, a St. Joseph‘s participant who had been an artist resumed painting in the program‘s art class after having stopped for ten years. As of December 31, 2007, the two adult day services programs in the Northwest partnership had enrolled 54 participant dyads and the King County program had enrolled 38 participant dyads. Evaluation of Memory Care and Wellness Services In order to study the effectiveness of the Memory Care and Wellness Services intervention, the ADDGS grant commissioned staff from the Northwest Research Group on Aging to design a study of the program that includes a comparison group. This evaluation is measuring the impact of the Memory Care and Wellness Services intervention on caregiver stress using the Center for Epidemiologic Studies-Depression scale (Radloff, 1977) and the caregiver anger scale adapted by Zarit et al (1998). The evaluation is also using the Revised Memory and Behavior Problem Checklist to measure care recipients for memory, depression, and disruptive behavior (Teri, 1992), and the Quality of Life-AD measure to assess quality of life for both caregiver and care recipient (Logsdon, 2002). The study is recruiting a treatment group of 100 caregiver/care recipient dyads to participate in the Memory Care and Wellness Services program. Evaluators plan to recruit about 50 comparison dyads in areas of the state where access to Memory Care and Wellness Services is not available. To be eligible for the study, active and control caregiver/participant dyads must be either living with the primary family caregiver or living in the community with at least 40 hours of direct care and/or supervision from the primary family caregiver. Additionally, the participant must be receiving no more than six hours a week of formal support services, and not enrolled in an adult day services program. Participants in the treatment group must be willing to participate in the grant day services program for an average of at least two days per week for six months. Non-English speaking persons are ineligible for the study, although they may be enrolled in Memory Care and Wellness Services. Details of the referral protocol are in Appendix C. The evaluators for the overall Memory Care and Wellness Services program are currently recruiting dyads and gathering data. Typically, a caregiver and participant dyad referred for Memory Care and Wellness Services are invited to visit the participating adult day service provider for a day to experience the day services setting and receive an intake assessment from day services staff. If the dyad agrees to participate in the program, grant evaluation staff conduct their baseline evaluation within a two to three week period before the participant begins attending the program. The evaluators are collecting data from participants and caregivers at baseline, three months, six months and, if possible, at 12 and 18 months—if the participant leaves the program before 12 months, the evaluators telephone the caregiver at 12 and 18 months to ask about the health and placement of the participant. The earliest dyads recruited for the program had more advanced Alzheimer‘s disease and were leaving the program for institutional care within six 15
months. Now that the program has been operating longer, however, it is recruiting more of a mix of participants, some of whom remain with the program and can be followed in person for the full 18 months of the study. The evaluation of the Memory Care and Wellness Services program had recruited 81 caregiver/ participant dyads as of August 2007. The participants are about evenly divided between male and female, and are predominately Caucasian. Most are married, and two-thirds live with a spouse or partner. The other participants live with other family, except for one person who is living alone. Caregivers are predominately female with a mean age of 69, although the youngest was 33. As with the participants, caregivers are predominately Caucasians. Sixty-eight percent of the caregivers are spouses of the participants, while the rest are younger relatives. Comparison dyads are being recruited in areas with no access to the Memory Care and Wellness Services program. Recruitment of comparison dyads has been more difficult than grant leadership had hoped, particularly in urban King County where families have access to more services than in the rural northwest part of the state. Area Agency on Aging coordinators, Alzheimer‘s groups, and providers are helping recruit comparison dyads, and recruitment activities have included senior newsletters, flyers at local agencies, mailings to pharmacies, libraries, geriatricians and neurologists, and announcements at grant outreach events in targeted areas. The King County partnership was able to procure a feature article in the Seattle Times and the Northwest partnership was featured in an article in the Bellingham Herald. The grant is also offering $25.00 gift cards as an incentive for people to participate. Twenty-one comparison dyads have been recruited. EnhanceFitness Although Memory Care and Wellness Services was designed to include an exercise component, the grantee‘s original intention was to develop exercises in cooperation with the adult day service providers. After the selection of the Dementia Partnerships, however, continuing discussions among stakeholders led to the development of an exercise component based largely on the evidence-based EnhanceFitness program. EnhanceFitness was first developed in 1994 by researchers at the University of Washington Health Promotion Research Center in cooperation with Senior Services, as a program for healthy seniors.2 By 2003 the original EnhanceFitness had been adapted for frail older persons. Tests of the program for frail older persons, conducted in cooperation with Aging and Disability Services Administration in adult family homes, demonstrated effectiveness in improving physical conditioning for the participants. In response to these results, staff from the Aging and Disability Services Administration and Senior Services were planning to develop a programmed exercise intervention for adult day services. With the development of Memory Care and Wellness Services, grant leaders and Aging and Disability Services Administration staff jointly commissioned the Northwest Research Group on Aging and Senior Services of Seattle/King County to develop an adaptation of the EnhanceFitness program for persons with dementia attending Memory Care and Wellness
2 For a description of the original Enhanced Fitness program and peer-reviewed references, see the program website
resource area at http://www.projectenhance.org/admin_ef_resources.html.
Services sites. The resulting EnhanceFitness program for persons with dementia includes protocols and exercises adapted from the original program as well as elements of a second program called Reducing Disability in Alzheimer‘s Disease. Also developed at the University of Washington, Reducing Disability in Alzheimer‘s Disease combines exercise with behavior management for individuals with dementia (Teri et al, 2003). The Aging and Disability Services Administration provided additional funding to support the development of the adapted EnhanceFitness program. Using Older American Act administrative funds, the administration paid for needed equipment, licensing costs, and training fees required to implement the program at each of the three day services sites in the ADDGS Dementia Partnerships. Facilitators from the day services providers received training about the original EnhanceFitness program with additional training about the dementia modifications. As adapted for the grant, EnhanceFitness includes an hour and a half of exercise each day of the twice-weekly, five-hour Memory Care and Wellness Services intervention. The exercise is divided into three sessions of 20 to 30 minutes each, each devoted to one type of exercise: strengthening, balance, and endurance. Like the original EnhanceFitness, the grant program includes appropriate warm-up and cool-down exercises. Each participant receives an initial evaluation of physical ability to set realistic goals, and participant health is monitored regularly. Supervision of the participants includes attention to non-verbal cues of excessive discomfort and reminding participants to drink enough water. Activities and Accomplishments of EnhanceFitness Although EnhanceFitness was introduced as a part of Memory Care and Wellness Services after the day services providers agreed to participate in ADDGS grant activities, all three providers agreed to implement EnhanceFitness. Each provider sent two staff members to the training provided by the grant for the original EnhanceFitness program and the additional training for the dementia modifications. On-site training developed by Senior Services has provided continuing support for EnhanceFitness, and includes an ongoing review of the work of provider staff for technique, safety, and proper use of equipment. Adult day services providers and staff members have worked closely with the grant in implementing EnhanceFitness—as with the rest of the Memory Care and Wellness Services program, it took several months to fully implement the program. Issues specific to EnhanceFitness were: Making enough staff available to appropriately serve participants during parts of the EnhanceFitness sessions. Although the minimum staff ratio for Memory Care and Wellness is 1:4, staff discovered that EnhanceFitness often required ratios of 1:2 or 1:3 for appropriate assistance and safety monitoring. At St. Joseph, with the reorganization of the schedule so that Memory Care and Wellness Services began an hour before the rest of the provider‘s programs, staff moved parts of the EnhanceFitness session to a time when a higher ratio of staff was available. St. Joseph has also begun recruiting and training volunteers to provide additional support. Accommodating the exercise regimen to the needs of participants. For participants at risk of falling, the grant modified the protocol to utilize seated exercises. Since some of the
participants are not able to effectively express themselves, for weight training exercises, the staff has been paying close attention to non-verbal cues in determining the appropriate amount of weight for each participant. The staff has also been monitoring participant nutrition, particularly for participants with diabetes. Assuring staff members of the safety of EnhanceFitness. Early in the implementation of EnhanceFitness, some staff members were concerned that the exercise program could harm participants. The grant addressed these concerns by involving the day service nurses and therapists more closely in the initial evaluation and ongoing monitoring of participants. Based on these evaluations, the staff modifies the intensity of the exercise for each participant. Grant leaders and Aging and Disability Services Administration staff also consulted with the nurses and therapists to assist them in integrating participant monitoring into their responsibilities. Evaluation of EnhanceFitness Senior Services is leading a review of client outcomes from the dementia-modified EnhanceFitness exercise program separately from the evaluation of Memory Care and Wellness Services. Senior Services measures EnhanceFitness participant performance on an ongoing basis as part of their national program and is evaluating the Memory Care and Wellness Services participants using the same tools and process. The evaluation tests participants before they begin the adapted exercise class and after four months for their upper body strength, lower body strength, and balance. Senior Services is also working with Aging and Disability Services to develop performance measures that would be more meaningful for the family caregiver. At the end of June, 2007, Senior Services reported preliminary data for EnhanceFitness participants. Participants averaged 80.7 years of age, somewhat older than participants in other EnhanceFitness programs nationwide, who averaged 74 years. By the standard tests applied to EnhanceFitness participants, Senior Services reports that grant participants were significantly worse in physical functioning at baseline than other EnhanceFitness participants nationwide for 3 main types of exercises—the Up and Go, Chair Stand, and Arm Curls tests. Grant participants are improving over time in the measures for Arm Curls. They are declining in the other two exercises but to a degree that is not statistically insignificant. Alzheimer‘s disease participants measure poorly against other populations because their cognitive impairment plays a role in their performance under the standard measures; some EnhanceFitness measurements are dependent on the speed with which a participant performs the activity, and grant participants are slowed by their limited ability to follow instructions. Grant leaders consider this level of performance by the participants to be a satisfactory result for the program. The grant program places emphasis on having the participant move slowly and safely (Washington ADDGS, 2007); continued functionality rather than speed in performing exercises or short term gains in strength and agility is the priority for the exercise program. Benefits of the exercise program are expected to be long term, rather than over just a few months. Senior Services will continue to record participant performance using the standard measures until more appropriate measures are available for use with this population. Adult day services staff members report other positive outcomes from EnhanceFitness. Although anecdotal, staff members report that some participants seem stronger physically and 18
that many participants exhibit improved self-image and engagement. For instance, some participants express pride in their ability to lift the weights used in the exercises. Staff members also report that family members are commenting on improved behavior by participants at home. Caregivers are reporting that participants are happier and easier to be with at home, have better balance and stamina, and sleep better at night. Dementia Family Support Consultation The Dementia Family Support Consultation component of grant activities provides homebased, dementia-specific consultation services to Alzheimer‘s family caregivers. Dementia Family Support Consultation is individualized to the specific needs of each family and is more intense than conventional case management. The consultation service developed by the grant draws on the experience of the Alzheimer‘s Association ―Connections‖ program implemented since 1994 by the Western and Central Washington State Chapter of the Alzheimer‘s Association. The grant program also incorporates elements of a similar intervention conducted by the Northwest Research Group on Aging which resulted in decreased stress among caregivers and decreased frequency and severity of behavioral problems among persons with dementia (Teri, 1997, 2003; Logsdon, 1997, 2005). The value of in-home counseling interventions has also been demonstrated through the work of Mary Mittelman, et al (1996, 2002, 2004a, 2004b, 2006, 2007), with the New York University intervention, between 1987 and 2006, and in the Home Environmental Skill-Building intervention documented by Gitlin, et al (2003, 2005). The Dementia Family Support Consultants provide caregivers with an individualized mix of dementia-specific training, assistance in making care planning decisions, and support with problem-solving related to their roles as caregivers. The service guidelines are presented in Appendix D. Specific consultant functions include: In-home assessment of the family and home care environment. Identification of the needs of the family caregiver and the person with dementia. Facilitation of communication and mutual understanding among family members. Training in behavioral and safety issues related to dementia. Education for family caregivers about respite care, self-care, and other community support services. Referrals to Alzheimer‘s-specific organizations and National Family Caregiver Support Program services. Ongoing support of up to ten hours of service per year.
Consultants must have a bachelor‘s degree in social work, psychology, gerontology, or an equivalent discipline and at least three years experience working with persons with dementia and their families. A master‘s degree is preferred. The Dementia Family Support Consultation program has a goal of serving at least 26 client caregivers per year in each Dementia Partnership site. The King County partnership 19
contracted with the Alzheimer‘s Association Chapter to provide these consultation services. The Northwest partnership contracted with four entities: the Alzheimer Society of Washington, St. Joseph Adult Day Health Care, and two individual consultants. Activities and Accomplishments of Dementia Family Support Consultation Consultants in both dementia partnership sites began meeting with caregivers in the first half of 2006. Families receiving consultant services are referred directly to consultants by the Dementia Partnerships. There have been two training sessions for the family consultants. The trainings provided the consultants with guidance in applying the guidelines for the intervention, and in the use of the Pleasant Events Schedule, a structured intervention that helps caregivers focus on positive experiences. The Training, Communications, and Development Unit of the Aging and Disability Services Administration and the Northwest Research Group on Aging also trained the consultants in the use the Family Goal Achievement assessment tracking instrument developed by the grant. In addition to these training classes, consultants have received ongoing technical assistance support from Aging and Disability Services Administration staff. Consultants report that they have encountered a range of family issues. In some cases, consultants have found that caregivers need only information and a limited amount of training in caregiving techniques to establish a stable situation. In other cases, the person with Alzheimer‘s may have suffered a stroke or a fall and the caregiver requires intensive assistance for the crisis and in adapting to the changed family situation that follows. The consultants concentrate on supporting the main caregiver, but in many families they also find it necessary to counsel other family members who are involved with caring for the person with Alzheimer‘s disease. Consultants report that they like to visit the family home to observe how the family functions in that setting as well as to identify safety issues, such as scatter rugs or the need for grab bars. Consultants have some flexibility in the amount of service they provide to each family. While a family may receive up to ten visits, not all families need that many contacts. Grant leadership is allowing consultants to use the unused hours to support families with more intense needs. A major issue for consultation services in the Northwest partnership is the difficulty that long travel distances present for reaching the rural population of the counties. In one case a caregiver lived 40 miles from the closest counselor. The partnership uses a network of consultants located across the area to minimize travel distances as much as possible. Travel costs are included in the hourly rate structure for the fees the consultants receive. Consultants also make some initial contacts by telephone, and may arrange to meet a caregiver at a closer location. As of December 31, 2007, 15 caregivers had received consultation services from the Northwest Regional partnership and 49 caregivers had received consultation services from the King County partnership. Fifty of the caregivers have been white/non-Hispanic, including all the caregivers served by the Northwest Regional partnership. Nine African-American caregivers, four Asian-American caregivers and one Hispanic caregiver have been served by the King
County partnership. Forty-five of the caregivers were age 60 or older, including nine who were 85 years or older. Evaluation of the Dementia Family Support Consultation The grant is conducting an evaluation of Dementia Family Support Consultation to determine whether the intervention is meeting the needs of caregivers. The evaluation is based on information provided by the Family Goal Achievement tracking instrument developed for this project. This tracking instrument is based on the concepts of the Goal Attainment Scaling Instrument (Rockwood et al, 1993), a widely used tool to assess caregiver goals. The consultants record caregiver goals during the initial assessment and track caregiver accomplishments during the consultation, then complete a post-test form and submit the instrument for review one month after cessation of consultation services. The instrument aggregates outcome data and compares caregiver success in meeting their goals, taking into account caregivers‘ varying goals. Consultants report that their interactions with caregivers have been positive, and that the caregivers receiving the intervention say they have an improved quality of life. However, because most of the consultation cases are still in process, few of the Family Goal Achievement forms have been completed. The analysis of the effectiveness of the intervention based on the contents of these instruments will be conducted later in the grant. Family Caregiver Counseling The Family Caregiver Counseling program provides enhanced psychosocial support to family caregivers of persons with Alzheimer‘s disease who have depression, other mental health issues, or family issues that prevent them from being effective caregivers. The counseling intervention is based in part on the work of Mary Mittelman, who demonstrated the effectiveness of a family consultation intervention through a randomized control trial study conducted between 1987 and 2006. In the New York University model, counselor and caregiver jointly identify goals to enhance the caregiver‘s ability to function in the caregiver role (Mittelman et al, 2002). Mittelman showed that a structured counseling program increased caregiver skills, mobilized natural support networks, and produced significant improvements in self-rated health among family caregivers of persons with dementia. Her analysis also indicated that the intervention significantly delayed nursing home placement for caregivers of persons with dementia—a median delay of 329 to 557 days (Mittelman 1996, 2004, 2006, 2007). Research at the Northwest Research group for Aging demonstrated that a similar counseling intervention led to decreased depression for family caregivers (Teri 1997; Logsdon 2005). Family Caregiver Counselors must have a master‘s degree in social work, counseling, or a related subject and at least three years of experience in direct counseling. Therapists with experience in solution-focused therapy, working with family caregivers, knowledge of dementia, or family caregiving are preferred.
The components of Family Caregiver Counseling are included in Appendix E, and some of the key elements are: In-home service. A structured assessment. A solution-based plan identifying the problem and a measurable goal. Training for the caregiver in problem solving, self-care, stress management, and positive change. Ongoing support of up to ten hours of service per year.
The counseling intervention is targeted to the primary caregiver initially, and then ideally is expanded to other family members to help provide support to the primary caregiver. The King County partnership has contracted with the Evergreen Healthcare Geriatric Regional Assessment Team for counseling services, while the Northwest partnership has contracted with individual counselors. Family Caregiver Counseling programs for each of the dementia partnerships are expected to serve at least 13 caregiver clients per year. Activities and Accomplishments of Family Caregiver Counseling Counselors in both dementia partnership sites began meeting with caregivers in the first half of 2006. As with the consulting service, families receiving counseling are referred through each of the dementia partnerships. Training for counselors was developed collaboratively with the Northwest Research Group on Aging. Training included guidance in applying the intervention guidelines and goal development. The Training, Communications, and Development Unit of the Aging and Disability Services Administration and the Northwest Research Group on Aging also trained the consultants in the use the Family Goal Achievement assessment tracking instrument developed by the grant. The counselors report that major issues they have encountered are self-care concerns related to depression, stress and anger management, and the grief and loss experienced as the condition of the person with dementia declines. To meet these needs, the counselors have been employing goal development therapies, as well as behavioral therapy, to assist the caregivers. In one technique commonly used by the counselors, caregivers are assigned concrete tasks in arranging supports or participating in self-care activities. By achieving these goals, caregivers are able to enhance their self-worth and sense of control. Caregivers referred to the counselors have had a range of problems, including substance abuse and mental health issues such as depression, dementia, schizophrenia and bipolar disorder. In working with these caregivers counselors try to identify another family member to function in a caregiver role. They may use family counseling to help establish a stable caregiving situation in these cases. The counselors may also consult with a psychiatrist or the caregiver‘s primary physician to address the caregiver‘s needs through medical intervention. 22
As with the consultants, travel distances make it more difficult for counselors from the Northwest partnership to reach the rural population of the counties. The partnership is providing counseling services to the rural population through private consultants across the area, and includes travel costs in the rate structure for the counselors. In some cases counselors are able to do some follow-up by telephone or meet a caregiver at a closer location. As of December 31, 2007, 16 caregivers had received counseling services from the Northwest Regional partnership and 49 caregivers had received counseling services from the King County partnership. Sixty-one of the caregivers have been white/non-Hispanic, including all the caregivers served by the Northwest Regional partnership. Two African-American caregivers and one Asian-American caregiver have been served by the King County partnership. Forty-two of these caregivers were age 60 or older, including 6 aged 85 or older. Evaluation of Family Caregiver Counseling The grant is evaluating the counseling program using the same Family Goal Achievement tracking instrument developed for the Dementia Family Support Consultation.. Like the consultants, the counselors employ the instrument as part of their assessment, recording caregiver goals during the initial assessment and tracking caregiver accomplishments during the consultation, submitting the form for review one month after cessation of consultation services. The instrument aggregates outcome data and compares caregiver success in meeting their goals, taking into account caregivers‘ varying goals. As with the consultants, counselors report that their interactions with caregivers have been productive, and that the caregivers receiving the intervention say they have an improved quality of life. However, many of the counseling cases are still in process and few of the counselor‘s Family Goal Achievement forms have been completed. The analysis of the effectiveness of the intervention based on the contents of these instruments will be conducted later in the grant.
SECTION 4 STRATEGIES FOR SYSTEMS CHANGE AND SUSTAINABILITY The Washington ADDGS grant is seeking to promote systems change and to sustain their activities at the end of the grant funding through: Integration of grant activities with existing organizations; and State support for ongoing caregiver services.
Integration of Grant Activities with Existing Organizations There is strong potential for local grant activities to continue in some form at the end of the grant because they have been located within existing organizations and complement their ongoing functions. The Dementia Partnership model serves the Area Agency on Aging mandate to leverage their activities in providing access to services for older adults. Memory Care and Wellness Services is an extension of adult day care and adult day health care programs for adult day services providers. The consultation and counseling interventions are closely related to existing programs by the Alzheimer‘s organizations in the state and advance their organizational goals. The development of a central system of referrals by the Dementia Partnerships has made it easier to link families to services, and partnership members report that the joint outreach and educational activities have magnified the effect of each partner‘s activities. Prior to the ADDGS grant, the partnership organizations report that their relationships were cordial but based largely on personal contacts. The Dementia Partnership experience has established an institutional relationship linking Area Agencies on Aging, day service providers, and Alzheimer‘s-specific organizations in outreach, education, and service referral. The participating partners at both sites believe that the institutional relationships developed under the grant will continue at the conclusion of grant financial support. All the partnership members report that the partnership experience has enhanced their capacities. For the Area Agencies on Aging, the partnership experience has strengthened existing ties with all the partnership members in the grant sites. At both sites, Area Agencies on Aging are now able to provide enhanced access to services through networks of referrals. The Alzheimer‘s Association Chapter and the Alzheimer Society of Washington have gained valuable experience in providing consulting services as well as wider knowledge of resources in their service areas. Both organizations also have closer communications with the staff at the Aging and Disability Services Administration and the State Unit on Aging. All of the adult day services providers participating in the grant have expressed an interest in continuing to offer dementia-competent adult day services on the grant model after the conclusion of the grant, and the Washington Adult Day Services Association is preparing plans to promote the approach with its membership. Although Memory Care and Wellness Services has been enthusiastically embraced by the participating adult day service providers as a means to expand their services, grant experiences indicate that Memory Care and Wellness Services will require ongoing technical assistance to ensure the integrity of the program interventions. Staff turnover among the providers in the grant demonstration has demonstrated the need for a continuous training program. Adult Day Care 24
providers, as opposed to Adult Day Health Care providers, will continue to provide a greater challenge for the intervention because of their need to integrate nursing and therapy services into their programs. Adult day services providers will also be limited by their financial resources. For instance, the Skagit program depends in part on grants other than the ADDGS grant to meet its expenses, and the St. Joseph‘s program, even with support from St. Joseph‘s Hospital, was unable to sustain dementia day services in the past. The ability of state adult day services providers to continue Memory Care and Wellness Services will depend on their ability to address these issues. State Support for Ongoing Caregiver Supports At the state level, State Unit on Aging leadership sees grant activities as a potential model for expanding the services provided to caregivers through the National Family Caregiver Support Program and the Washington Family Caregiver Support Program. State Unit on Aging leadership is favorably impressed by the academic rigor of the evaluation under way through the University of Washington, and plans to incorporate grant caregiver support activities demonstrating positive outcomes into the Washington Family Caregiver Support Program. Implementing new Dementia Partnerships to support family caregivers is among the goals in the 2006-2010 State Plan on Aging. Similarly, the Home and Community Programs unit of Aging and Disability Services Administration, which is reviewing the state adult day care regulations, is studying Memory Care and Wellness Services as a potential state dementia day services program for inclusion under Medicaid. The State Unit on Aging is also studying the effect of Memory Care and Wellness Services eligibility criteria, which are more liberal than the state‘s existing rules for adult day care and adult day health care. Because of the close relationship between Home and Community Services units, cost-neutral changes in approach regarding long-term care supports can often be developed at the division level. Grant leaders are hopeful that the state will enhance its funding of the Washington Family Caregiver Support Program. A long term care task force was formed by the legislature in 2006, and family caregiving is a task force priority. The legislature has also shown support for adult day services, increasing Medicaid rates at about the same time as the initiation of the ADDGS grant. The Home and Community Services of Aging and Disability Services is sending reports on caregiver needs from the State Unit on Aging and its other units through the Aging and Disability Services Administration to inform the legislative task force. Because dementia caregivers are a significant part of the caregiver population, their needs are being highlighted in those reports. Activities planned by the grant partners may also increase support in the legislature for caregivers. The Washington Adult Day Services Association is particularly interested in expanding dementia respite services, and has a grass roots network of members throughout the state. ElderHealth Northwest also intends to advocate for continued state funding to continue the grant program. Most participants receiving adult day services are supported by Medicaid or state respite funding, and both the Association and ElderHealth Northwest will argue that a dementia respite program saves the state money by preventing institutional placement. Additionally, the Alzheimer‘s Association Chapter has been active in supporting caregiver legislation and the Alzheimer Society of Washington, which has previously been less active in seeking state funding
for dementia, has expressed an interest in becoming more active in working with state lawmakers.
SECTION 5 CONCLUSION The Washington Alzheimer‘s Disease Demonstration Grants to States (ADDGS) grant has implemented an integrated approach at the local level to support caregivers and persons with Alzheimer‘s disease. Working in both urban and rural settings, the grant implemented four components: Local Dementia Partnerships under the leadership of Area Agencies on Aging to foster communication between providers serving caregivers of clients with Alzheimer‘s disease and other dementias. Memory Care and Wellness Services, a dementia day services approach employing evidencebased interventions including EnhanceFitness, an exercise program adapted for clients with Alzheimer‘s disease. Dementia Family Support Consultation services to educate family caregivers and to support them in care planning. Family Caregiver Counseling services to provide evidence-based, brief-therapy for caregivers with mental health issues or problematic family relationships
The Dementia Partnerships have established an institutional framework to support caregivers of persons with Alzheimer‘s disease. This framework has brought together the major providers of caregiver support: the Area Agencies on Aging and the Family Caregiver Support Program; the Alzheimer‘s Association and the Alzheimer Society of Washington; the adult day service respite providers for each of the partnership areas; and other caregiver service organizations at each site. This framework benefits both providers and caregivers through a unified ‗no wrong door‘ system of referrals, and enhances access to services through joint outreach activities. The partnership also enhances the service capability of each of its members by sharing their expertise. The Memory Care and Wellness Services program is piloting a new approach to dementia respite for Washington. It serves people with Alzheimer‘s disease through a specialized program, incorporating elements of promising and evidence-based interventions including Montessori-Based Activities for People with Dementia, Time Slips techniques, and the EnhanceFitness physical activity intervention. It also serves the caregivers of these persons by informing them about the disease and involving them in the direction of care for their family member. Anecdotal reports indicate that by improving the health of the participant, the program is improving the quality of life for the family at home. A comparison group study is underway to examine the effects of the program. The EnhanceFitness program is a unique element of Memory Care and Wellness Services. Based on an evidence-based fitness intervention for older persons, the grant version of the EnhanceFitness intervention incorporates further research involving exercise for persons with dementia, and provides a safe and positive structured exercise program for participants with dementia in the group setting. Preliminary results of a program assessment indicate that the
participants may be retaining physical function as a result of EnhanceFitness activities, and families report a positive impact on participant behavior, strength, and balance. The Dementia Family Support Consultation program directly addresses the needs of caregivers for training in how best to care for their family member. The consultants are professionally trained and have experience in working with families under stress. With further training developed by the grant, the consultants are equipped to provide emotional support and practical help to caregivers in their homes. Reports from the consultants suggest that this has been very helpful to caregivers, and a formal evaluation of the program is underway. The Family Caregiver Counseling program moves beyond consultation to help the most needy and vulnerable caregivers with support techniques based on the findings of evidence-based interventions. These caregivers are unable to use the help provided by the consultants because of severe problems of their own, including mental health and substance abuse issues. The grant counselors are professionally trained and have experience in recognizing these problems and intervening through psychological techniques and referrals for medical attention. As with the consultation intervention, the formal evaluation of the program is still underway, but reports from the counselors suggest that the program has been effective. The Washington ADDGS grant project is a practical, comprehensive, and unified approach that promotes systems change to enhance caregiver support. The grant has based its efforts on existing organizations, and the program knowledge developed through grant partnership activities can continue to be a part of the institutional capacity of those groups after the grant ends. The Memory Care and Wellness Services demonstration is a valuable asset for day services providers, and the day services providers enthusiastically support replicating it statewide. Grant activities support the core missions of the participating Area Agencies on Aging, Alzheimer disease-specific organizations, and other partners, and the expertise developed under grant programs will be incorporated into ongoing caregiver services. There is strong potential for continued state support of these innovations at the conclusion of the grant: support for caregivers is a goal of the Aging and Disability Services Administration, the State Unit on Aging, and the state legislature; and grant caregiver support activities are being actively considered for replication and continued funding as a part of the state‘s Family Caregiver Support Program.
REFERENCES Gitlin, L., Winter, L., Corcoran, M., Dennis, M., Schinfeld, S., Hauck, W. (2003) Effects of the Home Environment Sekii-building Program on the Caregiver-Care Recipient Dyad: Six-Month Outcomes from the Philadelphia REACH Initiative. The Gerontologist, 43(4), 532-546. Gitlin, L., Hauck, W., Dennis, M., Winter, L. (2005) Maintenance of Effects of the Home Environmental Skill-Building Program for Family Caregivers and Individuals with Alzheimer‘s disease and Related Disorders, Journal of Gerontology: Medical Sciences, 60A(3), 368-374. Logsdon, R.,McCurry, S., Moore, A., Teri, L. (1997) Family and Caregiver Issues in the Treatment of the Dementia Patient. Seminars in Clinical Neuropsychiatry, 2(2), 138-151. Logsdon, R., Gibbons, L., McCurry, S., Teri, L. (2002) Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510-519. Logsdon, R., McCurry, S., Teri, L. (2005) STAR-Caregivers: A Community-based Approach for Teaching Family Caregivers to Use Behavioral Strategies to Reduce Affective Disturbances in Persons With Dementia. Alzheimer’s Care Quarterly, 6(5), 146-153. Mittelman, M., Ferris, S., Shulman, E., Steinberg, G., Levin, B. (1996) A Family Intervention to Delay Nursing Home Placement of Patients with Alzheimer disease. A Randomized Controlled Trial. Journal of the American Medical Association, 276(21), 1725-1731. Mittelman, M., Roth, D., Coon, D., Haley, W. (2004a) Sustained Benefit of Supportive Intervention for Depressive Symptoms in Caregivers of patients with Alzheimer‘s Disease. American Journal of Psychiatry, 161(5), 850-856. Mittelman, M., Roth, D., Haley, W., Zarit, S. (2004b) Effects of a Caregiver Intervention on Negative Caregiver Appraisals of Behavior Problems in patients with Alzheimer‘s Disease: Results of a Randomized Trial. Journal of Gerontology: Psychological Sciences 59B(1), P27P34. Mittelman, M., Haley, W., Clay, O., Roth, D. (2006) Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease, Neurology, 67, 1592-1599. Mittelman, M., Roth, D, Clay, O., Haley, W. (2007) Preserving Health of Alzheimer Caregivers: Impact of Spouse Caregiver Intervention. American Journal of Geriatric Psychiatry 15, 780789. Mittelman, M., Epstein, C., Pierzchala, A. (2002) Counseling the Alzheimer’s Caregiver. Chicago, IL: AMA Press. Radloff, L. (1997) The CES-D Scale: A self report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. Rockwood, K, Stolee, P., Fox, P. (1993) Use of Goal Attainment Scaling in measuring clinically important change in the frail elderly. Journal of Clinical Epidemiology, 46, 1113-1118.
Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S., Vitaliano, P. (1992) Assessment of behavioral problems in dementia: The Revised memory and Behavior Problems Checklist. Psychology and Aging, 7, 622-631. Teri, L., Logsdon, R., Uomoto, J., McCurry, S. (1997) Behavioral Treatment of Depression in Dementia Patients: A Controlled Clinical Trial. Journal of Gerontology: Psychological Sciences, 52(4), 150-166. Teri, L., Gibbons, L., McCurry, S., Logsdon, R., Buchner, D., Barlow, W., Kukull, W., LaCroix, A., McCormick, W., Larson, E. (2003) Exercise Plus Behavioral management in patients with Alzheimer Disease: A Randomized Controlled Trial. Journal of the American Medical Association, 290(15), 2015-2022. U.S. Administration on Aging (2006). Alzheimer‘s Demonstration Program Fact Sheet, available at http://www.aoa.gov/alz/carefam/disease_info/fact_sheets/aoa_fact_sheet.aspx. Washington State ADDGS Grant. Performance/Progress Report. Reporting period: January 1– June 30, 1997. Zarit S., Stephens, P, Townsend, A., Greene, R. (1998) Stress reduction for family caregivers: Effects of adult day care use. Journal of Gerontology: Social Sciences, 53(5), S267-S277.
APPENDIX A: SEATTLE/KING COUNTY DEMENTIA PARTNERSHIP REFERRAL GRAPHIC
APPENDIX B: DEMENTIA DAY SERVICES STANDARDS AND RECOMMENDATIONS
DEMENTIA DAY SERVICES
STANDARDS AND RECOMMENDATIONS
INTRODUCTION Aging and Disability Services Administration (ADSA) is implementing the Alzheimer‘s Disease Demonstration Grant to States. As the lead agency for this grant, ADSA is partnering with Area Agencies on Aging (AAAs), Alzheimer‘s Association Chapters, the Alzheimer Society of Washington, Washington Adult Day Services Association and the University of Washington in the demonstration of: a local Dementia Partnership model to improve access to and utilization of family caregiver support and respite care services; dementia day services; dementia-specific family consultation services; and family caregiver counseling services. As a major development component, the project will develop and evaluate a model of dementia day services that can be integrated into the statewide community-based system of care. Neither the adult day care nor the adult day health care model, as currently defined in Washington State, responds specifically to the needs of individuals with dementia and their family caregivers. The dementia day service model envisioned is neither adult day care nor adult day health care but a service developed specifically to respond to the needs of individuals with dementia and their family caregivers. The expectation or ―standards‖ expected for this new service were developed through the collaborative work of stakeholders including the Washington Adult Day Services Association, the Alzheimer‘s Association, the Alzheimer‘s Society of Washington, the Washington Association of Area Agencies on Aging, the University of Washington, ADSA and adult day service providers. This development process included review and consideration of other states‘ efforts to serve this population through specialized programming. The demonstration project includes an independent outcome evaluation, of the dementia day service model, conducted by the University of Washington School of Nursing Northwest Research Group on Aging. The standards developed for this project will apply only to those contracted adult day service providers that participate in this demonstration project. The demonstration will occur in two AAA planning and service areas, selected through a competitive process. It is the responsibility of the AAA to determine, from their service area, a local day center/s that have the capacity and willingness to meet the requirements set forth in this document. It is assumed that the adult day service providers selected will already meet WAC requirements at the adult day care level; as such, those requirements are not addressed herein. Instead, the focus of this document is the unique variations or features that are needed to create a truly specialized day program for people with dementia and their caregivers. ADSA recognizes the importance of service flexibility and is very interested in understanding the varied and creative approaches that will help us attain the vision of this model. At the same time, we must balance this flexibility with the need for clearly defined standards if we are to end up with a useful evaluation of both process and outcome, which will ultimately guide us towards the opportunity to seek development of a statewide program.
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As a component of the project, participating sites and a state level advisory group will review the standards during implementation and make recommendations for further program development—in short, this is a work in progress. TARGET POPULATION People with Alzheimer‘s disease or other dementia and their family caregivers. The program is designed for, and will concentrate on serving, those individuals with moderate to severe cognitive impairment whose care needs and behaviors make it difficult to participate in other existing programs. THIS DOCUMENT This document serves two purposes. First, it outlines the basic requirements or operational standards for dementia day services (referred to as ―Basics‖). Second, it shares the vision of its developers and offers additional guidance and recommendations for program enhancement throughout the text of the standards. The ―Recommendations‖ are provided by the stakeholder workgroup as suggestions and practices that have worked well for them in serving this population; these are not ―required‖ but may be helpful to providers establishing their dementiaspecific program. VISION STATEMENT People with dementia and their family caregivers need access to specialized day programs that are tailored to meet their unique needs and support their efforts to live optimally with the challenges of dementia. Truly specialized programs provide services that reflect an in-depth, professional understanding of dementia and are flexible enough to serve each participant and caregiver with an individualized, person-centered approach that maintains dignity and emphasizes respect. Specialized programs provide a safe, social and therapeutic environment purposefully designed to support participants‘ health, optimal functioning, and sense of self-worth through the provision of meaningful services and activities. Specialized programs build integrated linkages within the community in order to provide the support and service coordination needed to assist caregivers through their individual journeys to understand and cope with dementia, while trying to maintain their own health, wellness, and optimal functioning.
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Dementia Day Services—Standards of Care 1. STAFFING/STAFF TRAINING/SUPPORT: The effectiveness of a specialized program depends heavily upon its staffing. A specialized program needs a small staff-to-participant ratio and focused staff education and support in order to meet the unique needs of its participants and caregivers. In addition, the on-going availability of social work and nursing professionals coupled with occasional, consultative use of occupational/speech therapy services supports efforts to achieve optimal health, wellness, and functioning for participants and their family caregivers. Basics: A. Staff to participant ratio is 1:4. B. Staffing is configured to: Maintain consistency for participants even when absences or vacations occur; Allow time for appropriate documentation and family caregiver contact; Allow time for staff to meet, careplan, problem-solve, etc. as a team C. All staff receive in-depth initial and on-going training related to dementia care, with a focus on providing person-centered care: Partnerships formed with the AAA and local specialty organizations such as the Alzheimer‘s Society and the Alzheimer‘s Association are central to implementing these training goals; Staff participate in identifying their specific training needs and goals; Training programs recognize staff as caregivers and include support and tools to help them cope with their own grief, loss, and emotional reactions as participants experience decline(s) and death. D. Successful application of training in the program is demonstrated regularly and receives frequent and intentional positive reinforcement from supervisors and peers; opportunities for and encouragement of open, evaluative conversation about self, staff, and program performance occur on a regular basis. E. Professional/licensed staffing expectations that expand or add to the current minimum adult day care requirements include: Social Services Professional: Provides services 4 hours per day Nurse: Provides services 4 hours per day with a registered nurse providing at least one quarter of the total nursing hours each month; an LPN may be utilized to provide up to three quarters of the total nursing hours each month. Occupational/Speech Therapists: Hours of service provided vary with program size: o For programs serving 12 or fewer participants per day, services are provided 5 hours per month by a combination of these therapists for needed assessment, consultation, training and/or supervision.
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Exhibit B o For programs serving 13-25 participants per day, services are provided 10 hours per month by a combination of these therapists for needed assessment, consultation, training, and/or supervision. Recommendations: Role modeling and supportive mentoring can facilitate learning among employees Supervisors and staff may need training/coaching to help them support and empower one another consistently and constructively
2. FACILITY, PHYSICAL SAFETY AND ENVIRONMENT: Specialized programs have dedicated space for programming and are intentionally structured and decorated to meet the unique needs of participants and caregivers. Broadly, the facility needs to be safe, attractive, comfortable, non-institutional, and well-cued to encourage independence as much as possible. More specifically: Basics: A. Space exists for: Parallel and multiple group activities as well as for individuals to rest or seek privacy throughout the day; Individual activities; and Education, support groups, and private conferences. B. An adequate number of bathrooms are easily accessible, well-identified, well-cued, and include: Assistive devices to match participants‘ needs; Call bells and/or staff assistance and surveillance to ensure participant safety; Grab bars and non-slip shower floor textures, if a shower exists. C. With regards to wandering issues, the program has: A facility and environment to promote participant exercise, movement, and opportunities for safe wandering throughout the day; A system for protecting participants from unsafe wandering/undetected elopement; A plan to account for all participants at regular intervals throughout the day; Information for family caregivers about safety measures (ID bracelets, Safe Return program); Clear policies and procedures regarding participant elopement from the program; Staff who are trained to: maintain good surveillance; note increasing participant restlessness/anxiety and offer sound interventions; and communicate therapeutically to prevent purposeful elopement from the program. D. Specialized sensory considerations at the program include: The program is organized and clutter-free with lighting that is sufficient to minimize the potential for falls and visual misperceptions;
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Exhibit B Non-shiny, non-glare surfaces/tiles are used whenever possible to minimize visual misperceptions; Mirrors are used functionally (vs. for decorating purposes) to minimize visual misperceptions; Minimal noise levels and distractions and avoidance of multiple, competing sources of stimulation; and Adequate temperature control and use of individual comfort items such as blankets, throws, and pillows to prevent/minimize agitation.
E. With regards to basic safety, the following are not accessible to participants: Decorations or items that participants may inadvertently ingest, particularly items that may resemble food or candy (such as marbles or beads); Potentially hazardous chemicals or potentially unsafe items; and Potentially poisonous or potentially harmful flowers/plants. Recommendations: The presence of small, well-cued independent activity areas or interest points that encourage visual or tactile stimulation (library area, chair by window, tapestry on wall) Comfortable recliner chairs in view of the main activity area for rest periods Availability of a mobile phone for staff use in the community during participant elopement Hand-railings along hallways and main wall areas Floors even in texture and coloring with the floor color in contrast to wall color Colors that promote a calm, relaxing environment (soft hued blues, greens, natural tones) vs. colors that may be over-stimulating (very bright or neon-type colors, colors with a red base) Pictures and wall coverings that are simple in design yet interesting to look at and/or touch; pictures framed in non-glare glass, if possible Non-reflective paint or wall surfaces The capacity to close blinds/drapes and increase program lighting in the late afternoon and early evening helps to minimize some participants‘ potential for time- or lightdependent agitation or disorientation Having both a safe indoor and enclosed outdoor area with ―circular‖ walking paths Limited or no visibility of outside doors leading to unsafe areas; limited or no visibility of cues related to departure during programming (coats, hats, parking lot, front entry) Having a front desk staff member or volunteer posted near unsafe exit(s) at all times Sinks that are easily accessible via wheelchairs; toilets that are above average in height If a program serves participants requiring 2-person transfers, a Hoyer lift or other lift system is available If a shower exists, having the choice to stand up or sit down and use a hand-held shower head; the shower space is easily accessible by wheelchair Special attention paid to placement of accessories within the bathroom--specifically, participants should not have to lean too far forward or reach too far for grab bars, call bells, toilet paper, soap, etc. as this increases their risk for falls
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Exhibit B PROGRAMMING/SERVICES: 3. HOURS OF OPERATION AND LENGTH OF PROGRAM: Specialized programs strive to offer maximum flexibility in respite options in order to help family caregivers manage the challenges of living with dementia optimally over time. Basics: A. The program is able to accommodate participants at least 2 days per week at the same site and attempts to make available additional flexible day/hour respite options for participants and family caregivers. B. The dementia day service is established at a level of five hours per day. Recommendations: Ideally, providing any or all of the following: flexible start and end times, extended hours, ―drop in‖ respite, and weekend hours If a program is not able to provide these services, then forming linkages with other providers of these services—as well as overnight respite services—can be helpful For programs providing ―drop in‖ respite, creating parameters around receiving some advance notice helps ensure that adequate space and staffing are available
4. INTAKE/ASSESSMENT: Specialized programs recognize family caregivers as experts who play a crucial role in providing information needed to ensure quality participant care. In addition, specialized programs recognize the need to assess and monitor family caregiver status as well as participant status in order to support their efforts to live optimally with the challenges of dementia. Basics: A. On admission, the social work professional and registered nurse administer baseline cognitive, physical, and functional assessments for each participant as appropriate to each professional‘s scope of practice; re-administration occurs as needed, when status changes occur or are suspected, to guide careplanning. B. The social work professional assesses family caregiver issues such as perceived stress, supports/links, level of self-care, and use of services; programs can re-assess family caregivers periodically as needed to monitor and respond to changes in their status. C. The RN performs an initial medical assessment and maintains a core role in the development of the interdisciplinary careplan; focused or full re-assessments and careplan adjustments occur as needed, based on participant status, by the RN or by an LPN at the direction and under the supervision of the RN
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Exhibit B D. The services of an occupational or speech therapist are coordinated for assessment, consultation, teaching and/or supervision, on an as needed basis for specific participant and/or program needs.
5. CAREPLANNING/DOCUMENTATION: Specialized programs use an interdisciplinary approach to create individualized, person-centered careplans in close coordination with participants, family caregivers, physicians, and other key members of participants’ support systems. These programs recognize that the overall goal of a careplan is to help participants and family caregivers achieve the highest quality of life as they face the challenges and inevitable disease progression associated with dementia. Careplan interventions and measurable goals reflect a core focus of achieving and sustaining optimal health, functioning, and wellness through personcentered care and coordinated prevention and health management efforts. Basics: A. Careplans reflect key intake and assessment findings and incorporate each participant‘s strengths, interests, and abilities into planned activities that provide opportunities for success and self-esteem enhancement. B. The careplan identifies triggers that have the potential to increase behavioral patterns that may be detrimental to the participant‘s well-being--along with strategies and approaches to use when these triggers inadvertently occur. C. The careplan reflects how the participant‘s day is usually spent with enough detail that all staff can ensure consistent follow-through; at the same time, the careplan (and staff) allow for day to day variations in participants‘ moods, energy levels, and choices. D. End-of-life issues are addressed on intake and as needed; the careplan includes the participant‘s wishes in terms of resuscitation status, and paperwork required to implement that status is on file. E. The careplan includes at least one family caregiver goal related to self-care and addresses family caregiver needs related to support groups, education, and consultation as needed. F. The careplan is reviewed—including measurement of progress toward goals—and adjusted every 6 months or more often as needed to reflect changes in the participant‘s and/or family caregiver‘s status. G. Progress notes and flow sheets used by the program reflect: Actions taken to implement the careplan; Participant and family caregiver progress toward specific goals and in general;and Rationale/events leading to adjustments made to the careplan.
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Exhibit B 6. SPECIFIC ROLES OF PROFESSIONAL/LICENSED STAFF IN CAREPLAN DEVELOPMENT AND IMPLEMENTATION: The on-going availability of social work and nursing professionals coupled with occasional, consultative use of occupational/speech therapy services supports efforts to achieve optimal health, wellness, and functioning for participants and their family caregivers. Basics: A. The social service professional maintains a core role in the psychosocial aspects of careplan development and implementation, including: Assessment of participants‘ and family caregivers‘ psychosocial issues (for the participants, this may include cognitive status, depression, self-esteem, ability to interact with others, behavioral patterns, etc.; for the family caregivers, this may include perceived stress, level of self-care, supports/links, use of services, etc.); Communication and collaboration with the participant, family caregiver, health care provider(s), program staff, and other key members of the support network; Inclusion of interventions, strategies, and goals emphasizing optimal psychosocial functioning, health, and wellness for the participant and family caregiver (including provision of support to the participant and family caregiver both informally and possibly in support group settings); Teaching of staff and the family caregiver related to psychosocial issues as needed for successful implementation of the careplan (therapeutic communication approaches, strategies to impact behavioral patterns positively, end of life care and planning, etc.). On-going monitoring of participant and family caregiver status; provision of interventions and careplan adjustments as needed for status changes; Referrals to other professionals—such as the primary health care provider, geropsychiatric specialists, dieticians, etc.—as needed. B. The RN maintains a core role in the medical aspects of careplan development and implementation, including: Assessment of the participant‘s medical needs on intake; Communication and collaboration with the participant, family caregiver, health care provider(s), program staff, and other key members of the support network; Inclusion of goals/strategies emphasizing health and wellness promotion and illness prevention for the participant and possibly the family caregiver; Inclusion of monitoring and interventions needed to promote optimal health and functioning of the participant and possibly the family caregiver; Teaching of staff and family caregiver as needed for safe and successful implementation of the careplan; Provision of direct care services (such as medication administration, treatment provision) within the RN‘s scope of practice; provision of supervision and direction if an LPN will carry out select aspects of the designated plan, such as medication administration, treatment provision, or provision of assessment data for the revision of the care plan by the RN. On-going assessment, teaching, evaluation, and careplan adjustment based on the status of the participant and possibly the family caregiver.
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Exhibit B C. The occupational and speech therapists provide assessment, consultation, teaching and/or supervision as needed for specific participant and program needs: Occupational Therapists may be consulted to: Evaluate level of functioning with regards to activities of daily living and cognitiveperceptual functioning; Evaluate range of motion, balance, strength, coordination, and ability to transfer; Teach and train the participant, family caregiver, and/or program staff in the use of therapeutic, creative and self-care activities that maintain the participant‘s optimal capacity for self-care and independence and that are integrated into the participant‘s overall careplan; Train the participant, family caregiver, and/or program staff in the use of supportive, adaptive equipment or assistive devices; Provide on-going assessment, teaching, supervision, evaluation, and careplan adjustment recommendations based on the status/progress of the participant; Provide other needed services specific to an occupational therapist‘s scope of practice. Speech Therapists may be consulted to: Assess level of speech, swallowing, or communication disorders; Provide cognitive testing and resulting information about optimal techniques for helping participants to understand and be understood by others; Establish a treatment program to improve/maintain speech, swallowing, or communication abilities that is integrated into the participant‘s overall careplan; Establish a treatment program allowing optimal functioning of participants through the use of familiar objects and cues; Train the participant, family caregiver, and/or program staff in methods to assist the participant in improving/maintaining speech, communication, or swallowing abilities; Provide on-going assessment, teaching, supervision, evaluation, and careplan adjustment recommendations based on the status/progress of the participant; Provide other needed services specific to a speech therapist‘s scope of practice.
7. IDENTIFICATION OF AND RESPONSE TO STATUS CHANGES: Specialized programs monitor and assess for participant and family caregiver status changes on an on-going basis and provide flexible, responsive interventions in a timely manner. Basics: A. Through partnerships with their local AAA, specialty organizations and unique linkages, staff are educated about identifying and responding to common indicators of status changes experienced by people with dementia and their caregivers. B. The RN and/or SW: Provides staff education about health and wellness promotion and illness prevention focused to the needs of the program‘s participants and family caregivers.
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Exhibit B Provides additional supportive education about general, common status changes staff might encounter among participants, their significance, and how to respond; Addresses specific potential status changes for participants via their individual careplans, including interventions and responses to be implemented by staff if such status changes occur. Coordinates OT/ST services as needed to assess and/or consult related to status changes and provide training for family caregivers and program staff as needed.
C. Staff work with the participant, family caregiver, physician, intake/discharge staff of other providers, and other key members of the participant‘s support network on intake and as needed to: Lay out likely transition and emergency plans, based on the unique, current circumstances of each participant and family caregiver; and Facilitate optimal, coordinated transitions and continuity of care with status changes and transitions into and out of the program. D. When a participant enters the latter stages of dementia, dies, or experiences a need for a different type of care, the program provides transitional support as needed, including referral to a grief/loss support group.
8. COMMUNICATION AMONG STAFF AND KEY CONTACTS: Specialized programs demonstrate effective communication among their staff and with key contacts in a participant’s support network in order to provide quality dementia care and establish strong service linkages for the benefit of participants and caregivers. Basics: A. Staff meetings/briefings occur daily to discuss the plan for the day and relevant participant issues/updates. B. For significant changes and events of concern such as a fall, program staff provides timely notification to the participant‘s family caregiver; the participant‘s physician, and the participant‘s case manager. C. Care meetings are scheduled for each participant as needed; care meetings include the participant, the family caregiver, staff, and other key members of the participant‘s support network as needed. Recommendations: A centralized communication book or other system for noting last minute changes or unexpected events throughout the day Use of an agreed upon communication tool (a notebook, a dayplanner, e-mail or voicemail messages) to increase frequency of communication between staff and family caregiver Exchange of brochures/fact sheets by programs and key referral linkages so all can speak
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Exhibit B knowledgeably each services and facilitate a seamless process for family caregivers 9. TRANSPORTATION: On intake, specialized programs assess participant ability to use transportation services safely and encourage their use as they can extend respite time for the caregiver and relieve the family caregiver of this responsibility; also, the ride to the program can be a pleasurable, social time for many participants who enjoy a “tour” of their community, the company of others, and the feeling of independence derived from the trip. Basics: A. Since the task of filling out transportation paperwork can be overwhelming for many family caregivers and can create a potential barrier to service, staff assists family caregivers with this paperwork at the program when possible. B. Staff coordinate services with transportation providers as needed to ensure participants‘ safety and well-being, based on their current status; examples include: Hand-to-hand service; Emergency back-up plans when the usual transportation plan falls through or experiences a block; and Use of a few consistent drivers, if possible. Recommendations: In partnership with the AAA and local specialty organizations, the program attempts to include transportation providers in the dementia-specific trainings it provides Since attending a new program for a full day and using transportation services can be overwhelming for many, participants may need to adapt to the program and/or transportation in small steps; programs can help participants and family caregivers develop a plan for successful adjustment
10. ARRIVAL/GREETING/SETTLING IN: Specialized programs recognize that creating a smooth and positive arrival experience for participants and caregivers is integral for ensuring a calm, secure, and pleasant start to the day. Basics: A. Upon participant arrival, staff are available to: Greet each participant warmly and by name; Assist with coat removal and name tag application; and Provide gestures and cues so that the participant knows where he/she is and what happens next. B. A system for signing participants in and out on a daily basis exists and includes information about expected and actual times in and out and sources of transportation.
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Exhibit B C. Coffee, water, and possibly other beverages are available and offered to participants upon arrival. D. Breakfast foods and snacks are available for those who have pre-arranged this option and for those who may have unexpectedly missed breakfast. Recommendations: For participants at high-risk of wandering, a brief, daily note to describe clothing may be helpful A private area where--upon arrival—family caregivers may have some coffee and the opportunity to meet with other family caregivers and staff to gain peer and/or staff support and/or collaboration A routine group welcoming experience highlighting each participant in a meaningful way can help participants get off to a positive and secure start and build self-esteem and group cohesiveness; also, this routine allows staff to conduct broad participant assessment upon arrival (mood, posture, non-verbal s/s of pain, swollen ankles, etc.) Staff encourages family caregivers to label participants‘ coats and belongings and/or provides temporary ones at the program; arranging coats/belongings systematically ensures easy location by staff, family caregivers, and participants at departure time Placing program contact information on the backs of participant nametags can be helpful in the event of participant elopement from the program Some programs may have the resources to provide an additional in-home ―rise and shine‖ service for participants while other programs help to coordinate these services through available linkages (such as case managers) as needed
11. BEHAVIORAL CONSIDERATIONS: Specialized programs understand that participant behaviors are a form of communication and that behavior changes may indicate underlying physical/health issues. The program’s approach to addressing difficult behavioral patterns demonstrates: an in-depth understanding of dementia; flexibility; professional collaboration; frequent adaptation of strategies; and the formation of necessary and valuable linkages. Basics: A. All program staff receive dementia-specific training related to preventing and responding to difficult behavioral patterns; training programs focus on providing flexible, person-centered care and therapeutic communication techniques. B. Staff discuss participant behavioral patterns with the family caregiver at intake and on an ongoing basis to: identify patterns occurring at home and at the program; avoid triggers; be aware of solutions that currently work for the participant; provide family caregiver support and education; and use collaborative problem-solving to approach new issues as they arise. C. In collaboration with the family caregiver, staff provide referrals to the participant‘s physician and/or other appropriate professionals (such as geropsychiatric specialists) when
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Exhibit B changes are sudden and/or dramatic and/or do not respond to attempts at usual interventions or appropriate alternatives. D. Documentation related to participants‘ behavioral patterns includes baseline information, observed changes, interventions and referrals, plan for follow-up care, provision of follow-up care, and conclusions/resolutions.
12. ACTIVITIES/EXERCISE: Specialized programs offer activities for participants that are purposeful and meaningful in that that they directly support the participant’s careplan goals and intentionally draw on and highlight strengths and interests to promote optimal health, functioning, self-esteem, and enjoyment. Basics: A. The program‘s activities are sufficiently varied, providing opportunities to address participants‘ physical, cognitive, social, emotional, sensory, and spiritual needs. B. Participants are involved to the highest degree possible in choosing the types of activities included in their careplans and on the monthly calendar. C. Multiple and parallel activities—including independent activities--are available at one time in order to accommodate varied interests and ability levels. D. While main activities are planned, the program maintains the flexibility and supplies to provide unplanned activities to meet individual or group needs. E. Physical exercise is important to overall health and is part of each participant‘s careplan and each participant‘s day at the program. F. Activities are process oriented (vs. product or results focused) and ―no fail‖ in nature and include frequent positive reinforcement from staff. G. Participants‘ choices to decline participation in activities are honored. H. Rest periods and time for bathroom breaks and hydration are planned between activities. I. Sleeping at the program can disrupt participants‘ sleeping schedules at home and interfere with family caregivers‘ abilities to sleep, but may need to occur occasionally for some participants. J. Significant changes in participants‘ activity patterns are considered a change in behavior and staff provide follow-up as accordingly. K. Wandering or exploring is an activity that reduces anxiety for some participants, so safe areas for supervised wandering are needed.
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L. The program provides planned activities that keep participants and the program connected with the community; specifically, participants go on outings to the community, if it can be safely arranged, and/or community groups visit the program. M. All supplies/materials used in activities are non-toxic (ink pens, watercolor paints, etc.); exceptions may occur for participants with interests and abilities that require use of potentially harmful supplies (such as acrylic paints), but the program must provide staffing for activity assistance/supervision that ensures participant safety at all times. N. Staff and family caregiver communicate regularly about participants‘ interests and participation level in various activities at home and at the program and collaborate when status changes require adjustments to participants‘ careplans. Recommendations: Music, poetry, and art used therapeutically, in passive and active ways, allow sensory, emotional, and spiritual stimulation as well as self-expression of feelings and moods Opportunities for nurturing and doing for others (caring for baby dolls, gardening, engaging in intergenerational activities, or making cookies/crafts for others) ―Jobs‖ (such as folding towels, wiping tables) that participants can safely do--when a therapeutic effect is derived and participants choose to participate Activities that provide participants with pleasant, appropriate physical contact—such as hand massages, hair brushing/styling or nail care—are important and can effectively minimize participant behavior related to seeking inappropriate physical contact If a program is being built or remodeled, raised garden beds that can be reached in a standing position and/or from a wheelchair Resource materials/videos with activity ideas for family caregiver‘s use at home
13. ACTIVITIES OF DAILY LIVING/PERSONAL CARE: SPECIALIZED programs recognize that each participant is unique and has different needs for assistance with ADL‘s and personal care. Staff learn participant patterns and preferences during intake and adapt to changes on an on-going basis using a person-centered approach that reflects an in-depth understanding of dementia. Basics: A. Staff provide participant assistance using the following principles: Maintaining privacy and dignity; Communicating therapeutically with the participant about what needs to happen next and why; Breaking the task down to manageable steps for the participant; Encouraging the participant to participate to the maximum degree possible, even if this takes more time; Positively reinforcing success with each step of a task; and Maintaining a relaxed, enjoyable, and process-focused approach.
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B. Each staff member is fully informed about new or returning participants and their specific needs and unique preferences for assistance before providing care for them. C. With regards to status changes and/or challenging care issues, staff: Collaborate with the family caregiver to share new approaches for home and the program; Collaborate with the participant‘s physician and other key members of the participant‘s support network as needed; and Coordinate referrals to or the services of other professionals--such as occupational, physical, and speech therapists or dieticians—as needed. D. With regards to toileting and incontinence issues, staff: Provide a wide array of assistance, including: cueing; escorting; helping participants to understand and accept needed assistance; helping with clothing, hygiene and incontinence aids; monitoring skin and elimination patterns; safe transferring; infection control measures; and providing skin care to maintain and promote optimal skin integrity (washing, other interventions per care plan). Provide scheduled cueing/assistance every 1-2 hours for those who need it to avoid incontinent episodes; provide spontaneous assistance as needed. Encourage family caregivers to have extra clothing at the program for participants, in case of incontinent episodes. Recommendations: Keeping extra, donated clothing on-site for those with incontinent episodes who have no additional clothing with them Having separate bathrooms or private/shower areas for intensive needs helps to maintain privacy and allow continued access to bathrooms by other participants If a program has shower facilities, offering regular bathing as an additional service can eliminate this often exhausting and divisive task for family caregivers at home; scheduling participant attendance an hour earlier or later on bath days can provide time for bathing Seeking a referral/consult from a contracted OT/PT through the AAA is a possible strategy for programs working in partnership with their AAA‘s
14. MEALS/SNACKS: Dementia may lead to reduced or inappropriate food and fluid intake for many reasons, including decreased awareness of hunger and thirst; decreased ability to communicate hunger or thirst; difficulty with swallowing; visual misperceptions; decreased ability to recognize and/or utilize utensils; depression; and altered behavioral patterns. Specialized programs have staff who are trained to have a clear understanding of these issues and who tailor their efforts toward addressing them to provide optimal nutritional care for participants. Basics:
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Exhibit B A. Specialized programs provide: A dining area that is well-cued for its purpose with tables configured to encourage socialization; A separate, supervised area for dining for those who need or prefer it; A structured, routine approach to mealtime to prepare/cue participants for dining; Cueing and/or assistance to use the bathroom and wash hands prior to mealtime; Meals that are relaxed and not rushed, yet served promptly after seating. B. Regarding specific foods and fluids served, the program: Provides foods that are flavorful, nutritious, and visually appealing; Avoids, in general, foods that are difficult to chew and/or swallow; Provides finger foods and small, frequent portions for those who need them; Provides visible access to water throughout the day; breaks and reminders to drink water; and assistance getting and drinking water, if needed; Provides nutritious snacks in the morning and afternoon; and Provides breakfast foods for those who coordinate this service with the program and for those who miss breakfast at home on occasion. C. For participants who require specialized dining assistance or services: The program maintains staffing and volunteer help that is adequate to provide the assistance required by specific participants each day; Staff assisting at tables also facilitate socialization among participants; Adaptive eating equipment and specialized diets/textures validated by physician orders are available for those who need them; and For those who require tube feedings at the program, a nurse provides this service. D. Given that reduced appetite may occur for participants with dementia, for participants not consistently eating 1/3 RDA during meals at the program, staff: Communicate and problem-solve with family caregivers regarding intake and nutrition; Collaborate with family caregivers to observe for indicators that the participant‘s nutrition is inadequate (pattern of low intake; weight loss; low energy; increased fragility of skin, nails, or hair; reduced immunity and slowed healing). E. For participants who experience nutritional or swallowing issues at home or the program, staff: Coordinate and collaborate with the family caregiver; and Coordinate referrals to the participant‘s physician, a dietician, an occupational therapist, and/or a speech therapist as needed. Recommendations: Planning participant seating strategically helps to plan for assistance needs and avoid situations that may increase participants‘ anxiety or agitation Ensuring a contrast in color between the plate and the placemat or table facilitates visualization of the plate and the cueing its presence provides Playing soft, relaxing music in the background may enrich and optimize the dining experience
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Exhibit B for participants Referring participants to speech therapists facilitates evaluation of and assist with communication issues as well as swallowing issues 15. MEDICATION MANAGEMENT: Specialized programs are able to address participants‘ medication needs safely and collaborate with family caregivers and health professionals to resolve barriers to service, if possible, and facilitate the optimal health and well-being of each participant and family caregiver. Basics: A. The program obtains a current medication list for each participant on intake, including all prescription medications, non-prescription medications, vitamins, supplements, and naturopathic foods, ointments, or remedies used by the participant. The medication list is reviewed by the RN who verifies it with the participant‘s physician and addresses concerns or discrepancies as needed. The medication list is updated, reviewed, and verified by the RN every 6 months or more often if medication changes occur. B. Topics for staff and family caregiver education by the RN include: General issues pertaining to medications commonly used by older adults, particularly those with dementia and including a focus on safe use of medications, health and wellness promotion, and illness prevention; Specific, key issues pertaining to participants‘ medications and monitoring needs included in each participant‘s careplan as needed; and Family caregiver and staff questions/issues related to participants‘ medications as needed. C. The RN and/or other staff communicate with participants‘ family caregivers, physicians, other health care providers, and key members of the support network as needed to provide coordinated and responsive care related to participant status and medications. D. A specialized program stores all medications in a locked area designed for that purpose. While participants are encouraged to participate in taking their medications to the highest degree possible, all medications are safely secured until administration time. E. Nursing resources are available to ensure that general medication needs of participants are not a barrier to program access.
16. DEPARTURE: Since many program participants leave at or near the same time and elopement risk is high during this time, specialized programs work and plan to provide a calm, well-coordinated, and safe departure time. Basics:
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Exhibit B A. Participants are provided an opportunity to use the bathroom and have a drink of water prior to departure; other personal care needs are attended to as needed to preserve participants‘ dignity (assistance with clothing, posture or with cleaning one‘s dentures, etc.). B. Assigning staff with duties during departure is important, including providing hand-to-hand escorts to the family caregiver or driver; engaging remaining participants; and re-directing potentially unsafe wanderers. C. A system for signing participants in and out on a daily basis exists and includes information about expected and actual times in and out and sources of transportation. Recommendations: Activities starting after lunch and up to the time just prior to departure are structured and occur in areas where there is limited or no visibility of the front entry and/or parking lot areas, if possible Activities occurring during departure time are flexible in nature, allowing participants to leave when it is time without increasing their anxiety about what they will miss
17. CAREGIVER SUPPORT: Specialized programs recognize that each family caregiver is unique and individualize the support they provide to family caregivers accordingly. Basics: A. The program provides family caregivers with easy access to staff for support and professional consultation. B. Through partnerships with their AAA and local specialty organizations (Alzheimer‘s Association and/or Alzheimer‘s Society), the program offers dementia-specific support groups and education related to dementia and dementia care issues. C. Through partnerships and linkages, the program is able to provide family caregivers with information and referral services to resources that can provide education, mental health services, overnight respite care, legal and financial information, end-of-life planning and support, etc. Recommendations: Staff contact the family caregiver at least 1x month to check in, spend some focused listening time, and provide positive feedback and support.
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APPENDIX C: DEMENTIA DAY SERVICES EVALUATION PROJECT REFERRAL PROTOCOL
Dementia Day Referral Protocol
March 7, 2006
Dementia Day Services Evaluation Project Referral Protocol The research questions to be answered by this evaluation are: 1. Do individuals with dementia who attend a Dementia Day Services Program exhibit better health, mood, fewer behavior problems and/or better quality of life than those who do not attend such a program? 2. Do caregivers whose care recipient attends a Dementia Day Services Program exhibit better health, mood, less burden and perceived stress, and more satisfaction with the care recipient’s care than caregivers whose care recipient does not attend such a program? 3. Does participating in a Dementia Day Services Program delay residential placement? Project Methods Treatment Subjects: Subjects for this study will be dyads consisting of clients with dementia and their family caregivers, who are receiving no more than 6 hours a week of respite services, and are not enrolled in existing Adult Day Care or Adult Day Health Care programs.
1. Both Treatment and Comparison Groups- Persons with Alzheimer’s disease or other dementia documented by AAA or DSHS case manager. 2. Both Treatment and Comparison Groups—Person with Alzheimer’s disease or other dementia lives with a primary family caregiver or lives alone and receives at least 40 hours of direct care and/or supervision per week from a primary family caregiver. 3. Treatment Group Only—Person with Alzheimer’s disease or other dementia and their family caregiver are interested and willing to participate in dementia day services an average of at least two days per week for 6 months.
1. Both Treatment and Comparison Group—Prior to the study, the person with dementia must not be using formal support services (e.g., respite, in-home care) more than 6 hours per week or already using adult day care services. 2. Both Treatment and Comparison Group—Individuals who live in a professionally/formally supervised residential care setting, such as an adult family home, boarding home, assisted living, or nursing home are NOT eligible. 3. Both Treatment and Comparison Group—Non-English speaking persons are not eligible to participate in the study.
Intake staff will conduct their assessments of new referrals in their usual manner. When they discuss services that may be available to the care recipient and caregiver, they will include Dementia Day Services as an option for individuals who meet the eligibility criteria, and determine whether the client is interested in this service. If the client is
Approved by DSHS Human Subjects March 1, 2006
Dementia Day Referral Protocol
March 7, 2006
interested and eligible for the service, intake staff will ask whether they are willing to be contacted by the UW study coordinator to hear more about the research study. --Approved Contact Consent Script-There is normally a 2-3 week time lag while case managers are making arrangements for individuals to receive services. During this time, the study coordinator will contact interested caregivers and a research interviewer will complete a consenting and baseline evaluation appointment. Thus, the baseline evaluation will be completed after the clients apply for day services and before they begin receiving the services. Comparison Subjects: Comparison dyads will be identified in the same way as treatment dyads. If the person with dementia meets eligibility criteria for the Dementia Day Program, but does not live in an area served by the participating Day Centers, the caregiver will be asked if they would be willing to participate in a research study evaluating the benefits of different types of services for individuals and their caregivers. If the caregiver is willing, they will be referred to the research study and contacted by the UW Study Coordinator. Within 2 weeks of receiving the referral the study coordinator will contact the interested caregiver and a research interviewer will complete a consenting and baseline evaluation appointment. Matching Treatment and Comparison Subjects: After about 20 treatment and 10 comparison dyads are enrolled, the UW research team will run descriptive statistics to identify whether there are significant differences in age, education, gender, MMSE score, or caregiver-care recipient relationship. If there are no differences, we will continue to recruit study dyads as they apply for services. If differences are found, the UW research team will provide feedback to the case managers or intake workers and request that they pay particular attention to potentially eligible dyads who meet the needed criteria (e.g. individuals with greater cognitive impairment or adult child caregivers). In addition, we will provide a flyer about Dementia Day Services and the Evaluation that can be used to inform individual in participating communities about the program. Flyers will be available through the day centers, the Alzheimer’s Association and Alzheimer’s Society chapters, the AAA offices, and other locations where caregivers are likely to see them. --Approved Flyer-Both Treatment and Comparison Subjects: If they agree, the care recipients’ and caregivers’ names, addresses and phone numbers will be faxed to the UW Study Coordinator so that she may contact the caregiver. If a care recipient’s caregiver is not their legal guardian, then the legal guardian’s name, address and phone number will also be given to the UW Study Coordinator. The UW
Approved by DSHS Human Subjects March 1, 2006
Dementia Day Referral Protocol
March 7, 2006
Study Coordinator will contact the legal guardian and obtain consent prior to contacting the care recipient’s caregiver. Assessment Visits Consenting Visit- Once the consent appointment is scheduled, the study coordinator will mail a contact letter, consent forms and a Caregiver’s Packet of Questionnaires to the caregiver. The UW interviewer will meet with dyads who have agreed to hear more about the study in their home or other convenient and private location. If the client and caregiver do not live in the same residence, the meeting will take place in whichever residence or convenient location they choose. Some care recipients may have a guardian who is their legally authorized representative but is not their caregiver. The guardian will sign a consent form giving permission for the care recipient to participate and for the caregiver to provide personal information about the recipient. The guardian must give consent prior to the UW Study Coordinator contacting the caregiver and care recipient. Prior to initiating the baseline assessment, the research study interviewer will ask the caregiver to read their consent form. The interviewer will read the assent form to the care recipient. If both agree to participate in the study, they will be asked to sign their respective forms. After the consent/assent procedure, the baseline assessment will be completed. Prior to subsequent assessments, the interviewer will ask the care recipient and caregiver if they still want to continue answering questions for the research study. If the care recipient and/or caregiver decline to participate in either the 6 or 18-month interview, the visit will be politely ended and the UW study office will have no further contact with the dyad. Interviewer Characteristics- All assessments are conducted by an experienced geriatric research interviewer who is blinded to treatment condition. To insure blinding, the interviewer will not be informed about what condition the dyad is in, their condition will not identified anywhere on their study forms, and caregivers will be asked prior to each assessment not to discuss their study condition with the interviewer. Baseline Assessment- After the consent process, the interviewer will introduce and explain instructions for the Caregiver’s Packet of Questionnaires, and ask the caregiver to begin completing it while the care recipient is being interviewed privately in another room. The interview with the care recipient is done in person, and lasts approximately 30 minutes. Before leaving, the interviewer will ask if the caregiver has any questions about the questionnaires, and leave an addressed, postage-paid envelope for the caregiver to mail the packet back to the UW study office. If the packet is not returned within a week, the study coordinator or interviewer will make one reminder phone call to the caregiver to ask if the caregiver has mailed the packet back. If the caregiver has not mailed the packet, they will be asked to do so as soon as possible. If the caregiver indicates they wish to withdraw from the study the caller will thank them for their time and politely end the phone conversation. Study staff will not contact the dyad again.
Approved by DSHS Human Subjects March 1, 2006
Dementia Day Referral Protocol
March 7, 2006
6 Month and 18 Month Follow-Up Assessments*- Dyads will be contacted by the UW Study Coordinator to ensure they are still willing to participate in the study and to schedule the next evaluation. The Caregiver’s Packet of Questionnaires will be mailed in advance for the caregiver to complete. The interviewer will meet the dyad in their home and collect the caregiver questionnaire packet if they are completed. If the caregiver has not completed the questionnaires, the interviewer provides the caregiver an addressed, postage-paid envelope to return it to the UW once it is completed. The person with dementia will be interviewed in person. As with the baseline assessment, if the caregiver packet is not returned within a week, the study coordinator or interviewer will make a reminder phone call to the caregiver. If the caregiver indicates they wish to withdraw from the study, the caller will thank them for their time and politely end the phone conversation. Study staff will not contact the caregiver again. Subject Withdrawals If either a caregiver and/or care recipient withdraws from the study neither will be asked by the study coordinator to complete future assessments. The care recipient will be able to continue receiving Dementia Day Services as long as their DSHS case manager determines their eligibility for that service. Care recipients who move into an institutional setting (nursing home, assisted living facility, boarding home or adult family home) will be withdrawn from the study. The study coordinator will not contact the caregiver nor care recipient to complete future interviews.
*Note: The follow up assessments are now at 3 and 6-months (to reduce loss of subjects to follow up); but the contact procedures are identical.
Approved by DSHS Human Subjects March 1, 2006
APPENDIX D: DEMENTIA FAMILY SUPPORT CONSULTATION SERVICE GUIDELINES AND REQUIREMENTS
DEMENTIA FAMILY SUPPORT CONSULTATION SERVICE GUIDELINES & REQUIREMENTS
Description A home-based individualized intervention intended to build or strengthen the family‘s capacity to manage the challenges inherent in caring for persons with dementia. Based on family needs, consultation may focus on sharing knowledge about Alzheimer‘s disease or other dementia, teaching caregiving skills related to managing behavior and safety, and/or facilitating discussion, mutual understanding, and long term planning among family members. Consultation also promotes caregiver self-care and provides linkage with community resources and services. Eligibility for grant funded services will include: 1. A primary family caregiver of a person with Alzheimer‘s disease or dementia; 2. The person with dementia must be either— a) living alone and receiving at least 40 hours of direct care and/or supervision per week from the primary family caregiver; or b) living with the primary family caregiver in a home setting (i.e., not a licensed facility such as an adult family home, boarding home or nursing home). Notes: Outreach will target low-income populations. Priority will be given to those in greatest social and economic need. Priority will be given to caregivers who have not yet accessed this service. Referrals This specialized consultation service will be made available through referrals by the local Dementia Partnership organizations, specifically the FCSP, AAA/I & A, Dementia Day Service provider, or Alzheimer‘s-specific organization. Indicators for Appropriate Referral—Who would most benefit? (Info for outreach, referral sources) Family caregivers who are in need of individualized consultation due to their caregiver role. Specifically, those with feelings of stress or being overwhelmed by caregiving, having difficulty in understanding or adjusting to the disease, and/or difficulty in managing behaviors and day-today activities.
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Note: Caregivers with symptoms of depression or other mental health concerns (i.e., extreme anxiety, substance abuse, chronic mental illness) should be referred, when possible, directly to the Family Caregiver Counseling service.
Who can provide Dementia Family Caregiver Consultation: Minimum Qualifications
A BACHELOR‘S DEGREE IN SOCIAL WORK, PSYCHOLOGY, GERONTOLOGY OR EQUIVALENT AND AT LEAST THREE YEARS EXPERIENCE WORKING WITH INDIVIDUALS WITH DEMENTIA AND THEIR FAMILIES. A MASTER‘S DEGREE AND EXPERIENCE WITH FAMILY CAREGIVING ARE PREFERRED.
Dementia Family Support Consultation might effectively be delivered directly through the AAA, or indirectly through the dementia day center or other community-based organizations with expertise in dementia services. Protocols/Expectations 1. The role of Dementia Family Support Consultation is to: assess the family and home care environment; identify the needs of the family caregiver and the individual with dementia; facilitate discussion, mutual understanding, and long term planning among family members; provide consultation related to the disease itself, and managing behavioral and safety issues; educate family about the availability of community resources and services; and, facilitate referrals to the Family Caregiver Support Program (FCSP), Alzheimer‘sspecific organizations, appropriate medical services.
2. Consultation services are made available for up to 10 hours of direct service/year. This includes time for in-home assessment and consultation, as needed. 3. The home-based nature of the intervention is designed to facilitate review of the home situation as well as make the service simpler and less stressful for the caregiver. There may be times when the caregiver chooses, however, to meet outside the home or consult by telephone.
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4. Assessment: The purpose of the assessment is to gather information to determine needs and priorities of the caregiver and inform the development of a goal-directed plan for consultation services. The assessment process will gather the information required to meet the scope of service. This will include, at a minimum, the following elements: Review of the caregiving context and family system/support network; Needs of the primary family caregiver; Assessment of the home environment; REVIEW OF LEGAL/FINANCIAL LONG TERM CARE PLANNING ISSUES; NEEDS OF THE PERSON WITH DEMENTIA (I.E., NEED FOR ASSISTANCE, BEHAVIORAL ISSUES, ETC.); LEVEL OF KNOWLEDGE THAT THE CAREGIVER (AND INVOLVED FAMILY) HAS OF THE DISEASE PROCESS.
5. The consultant will develop a goal-directed plan for consultative services. The plan will identify the problem, the plan and the measurable goal. 6. Consultation services provide education about Alzheimer‘s disease or other dementia and on caregiving skills and strategies related to managing behavior and safety. Services also include support and problem-solving around the issues of self-care, linkage with community resources and services, and long term care planning. Consultation visits are targeted to the primary family caregiver/s. Inclusion of other family members, as agreed upon by the primary caregiver, is encouraged to facilitate discussion, mutual understanding and planning . The individual with dementia may be included. 7. The consultant will utilize the specified goal attainment tool used to evaluate progress for this project. At completion of service, referral to a support group is emphasized and support with attendance is provided (e.g., arranging respite, transportation, a peer to go along, etc.) and the availability of follow up consultation is explained (see below). Follow up consultation will be made available to family caregivers (in person or by telephone) who have completed this consultation program to help them deal with the changing nature and severity of their relative‘s symptoms over the course of the disease.
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8. Documentation, at a minimum, will include: Assessment forms Plan for consultation services Pre-test/Post-test & goal attainment evaluation tool Progress notes after each visit
Training and Technical Assistance ADSA, in conjunction with the UW, will provide technical assistance and training related to this element for the AAA and Dementia Family Support Consultant/s (staff or subcontracted). This technical assistance/training will include: Assessment issues and tools Developing plans Realistic, measurable goals
The AAA ensures that Dementia Family Support Consultant/s are trained in the use of the specified goal attainment tool, and that they complete and submit this tool as directed. ADSA, in collaboration with the state advisory group and local Dementia Partnership teams, will assist—as needed and requested—in training to support this service component in the following topic areas:
Family caregiver needs and emotions Family dynamics—roles, potential conflicts Facilitating family meetings—working towards mutual understanding and cooperation Teaching about Alzheimer‘s/dementia Assessing behavior and developing behavior interventions Reviewing the home for safety Local programs and support services
Note: These guidelines and requirements for Dementia Family Support Consultation were developed by a stakeholder workgroup between July and September, 2005 for use in the Alzheimer‘s Disease Demonstration Grant, Washington State.
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APPENDIX E: FAMILY CAREGIVER COUNSELING SERVICE GUIDELINES AND REQUIREMENTS
FAMILY CAREGIVER COUNSELING SERVICE GUIDELINES & REQUIREMENTS
Description Offers the family caregiver of an individual with dementia, emotional support through individual and family counseling sessions. This intervention is structured as a home-based solution-focused therapy with the content of the counseling sessions to be determined by the unique needs of each caregiving situation. Eligibility for grant funded services will include: 1. A primary family caregiver of a person with Alzheimer‘s disease or dementia; 2. The person with dementia must be either— a) living alone and receiving at least 40 hours of direct care and/or supervision per week from the primary family caregiver, or b) living with the primary family caregiver in a home setting (i.e., not a licensed facility such as an adult family home, boarding home or nursing home). Notes: Outreach will target low-income populations. Priority will be given to those in greatest social and economic need. Priority will be given to caregivers who have not yet accessed this service. Referrals This specialized counseling service will be made available through referrals by the local Dementia Partnership organizations, specifically the FCSP, AAA/I & A, Dementia Day Service provider, or Alzheimer‘s-specific organization. Indicators for Appropriate Referral—Who would most benefit? (Info for outreach, referral sources) Family caregivers who are in need of individual counseling due to their caregiver role. Specifically, those with symptoms of depression, extreme anxiety, chronic mental illness, substance abuse, anger issues, family relationships that are chronically conflictive or problematic or other complicating factors. Who can provide Family Caregiver Counseling Services: Minimum qualifications: A Master‘s degree in social work, counseling, or related subject, registered with the state, and at least three years experience in providing direct counseling services. Therapists with experience in solution-focused therapy, working with family caregivers, knowledge of dementia, and/or with family caregiving experience are preferred.
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Protocols/Expectations 1. This counseling intervention provides solution-focused therapy to address the individual needs of the primary family caregiver and support the larger family system in the caregiving effort. Counseling services/therapy will follow state guidelines for treatment. 2. Counseling services are made available for up to 10 hours of direct service/year. This includes time for in-home assessment and counseling, as needed. 3. The home-based nature of the intervention is designed to facilitate review of the home situation as well as make the service simpler and less stressful for the caregiver. There may be times when the caregiver chooses, however, to meet outside the home or consult by telephone. 4. Assessment: The purpose of the assessment is to gather information to determine needs and priorities of the family caregiver, and to inform the development of a solution-focused plan for counseling services. The assessment process should include, at a minimum, the following: Assessment of caregiver‘s mental health and substance abuse issues; Review of the caregiving context and family system/support network; Screening for caregiver burden and strain. 5. The counselor will develop a solution-focused plan for counseling services. The plan will identify the problem, the plan and the measurable goal. 6. Counseling services provide education and support on identified emotional issues experienced by the caregiver and focus on problem solving, self-care, stress management and positive change. Additionally, referrals to community services, including support groups, are made as appropriate. Counseling visits are targeted to the primary caregiver initially. Family counseling sessions, to include other family members as agreed upon by the primary caregiver, are strongly recommended. The purpose of family counseling is to help family members provide emotional support to the primary caregiver, and to help all family members adapt to the changes that the disease imposes on them. 7. The counselor will utilize the specified goal attainment tool to evaluate progress in this project. At completion of service, referral to a support group is emphasized and support with attendance is provided (e.g., arranging respite, transportation, a peer to go along, etc.), if desired, and the availability of ad hoc counseling is explained (see below). Ad hoc counseling will be made available to family caregivers (in person or by telephone) who have completed brief-therapy to help them deal with crises and with the changing nature and severity of their relatives/symptoms over the course of the disease.
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8. Documentation, at a minimum, will include: a) Assessment forms b) Plan for counseling services c) Pre-test/Post-test & goal attainment evaluation tool d) Progress notes after each visit Training and Technical Assistance ADSA, in conjunction with the UW, will provide technical assistance and training related to this element for the AAA and Family Caregiver Counselor/s (staff or subcontracted). This technical assistance/training will include: Assessment issues and tools Developing plans Realistic, measurable goals The AAA ensures that Family Caregiver Counselor/s are trained in the use of the specified goal attainment tool, and that they complete and submit this tool as directed. ADSA, in collaboration with the state advisory group, and local Dementia Partnership teams, will assist—as needed and requested—in training to support this service component in the following topic areas. Family caregiver needs and emotions Family dynamics—roles, potential conflicts Facilitating family meetings—working towards mutual understanding and cooperation Alzheimer‘s disease and related dementias Solution-focused therapy
Note: These guidelines and requirements for Family Caregiver Counseling were developed by a stakeholder workgroup between July and September, 2005 for use in the Alzheimer‘s Disease Demonstration Grant, Washington State.
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