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Resources for Caregivers

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					                   Resources for Caregivers
                   This resource guide was compiled by members of Caring Community,
                   WHYY’s volunteer coalition of more than 100 nonprofit organizations, universities,
                   government agencies, faith-based organizations and health care systems in the
                   Greater Philadelphia region. As a companion to Circle of
                   Love, WHYY’s series of first-person documentaries
                   on caregiving and chronic illness, and to PBS
                   specials such as Caring for Your Parents, And
                   Thou Shalt Honor and The Forgetting: A Portrait
                   of Alzheimer’s, it offers resources for living with
                   Alzheimer’s, and caring for an aging parent and
                   other loved ones. While not a comprehensive
                   listing, this guide can be a starting point for
                   anyone seeking to learn more about providing
                   care and supporting family caregivers you may
                   know. We hope you will find it helpful.

                   For more information as well as archives of
                   radio programming and webcasts, please visit www.
                   whyy.org/widerhorizons




www.whyy.org/                                             LIVING WITH ALZHEIMER’S
widerhorizons
                   Alzheimer’s Association—Delaware Valley Chapter
                   Programs include a 24-hour toll free Helpline/Contact Center, Safe Return (wanderer’s
150 N. Sixth St.   alert program), family caregiver training and conferences, newsletters, family assis-
                   tance programs and support groups. The Alzheimer’s Association also offers an exten-
Philadelphia,      sive resource library, professional in-service training, public policy and advocacy.
PA 19106                 399 Market Street, Suite 102
215-351-2095             Philadelphia, PA 19106
                         (215) 561-2919
                         (800) 272-3900
                         www.alz-delawarevalley.org

                         Southern NJ Regional Office
                         3 Eves Drive, Suite 310
                         Marlton, NJ 08053
                         (856) 797-1212

                         Delaware Regional Office
                         2306 Kirkwood Highway
                         Wilmington, DE 19805
                         (302) 633-4420

                   Alzheimer’s Disease Education and Referral Center
                   A service of the National Institute on Aging of the National Institutes of Health
                   providing information about Alzheimer’s disease and related disorders.
      PO Box 8250                                               information and services to consumers, caregivers and
      Silver Spring, MD 20907-8250                              the general public at no cost.
      (800) 438-4380
      www.alzheimers.org                                              1233 Locust St., 2nd floor
                                                                      Philadelphia, PA 19107
ALZwell Caregiver Support                                             (215) 985-4851
ALZwell is dedicated to helping dementia caregivers to                www.aidslibrary.org
find understanding, wisdom and support, offering infor-               E-mail: library@aidslibrary.org
mation on dementia care and other aspects of eldercare, a
network of support groups and links to other resources.         ALS Association — Greater Philadelphia Chapter
                                                                The ALS Association provides persons with ALS (Lou
      www.alzwell.com                                           Gehrig’s Disease), their family members and caregivers
                                                                with an array of support and services, including local
                                                                resource groups, education, respite care, equipment loan
                                                                and referrals.

                  CARING FOR AN                                       321 Norristown Road, Suite 260
                                                                      Ambler, PA 19002
        AGING PARENT OR PARTNER                                       (215) 643-5434, (877) 434-7441
                                                                      www.alsphiladelphia.org
The Association for Frontotemporal Dementias (AFTD)
                                                                The Caregivers Marketplace
AFTD is a new nationwide non-profit organization whose
                                                                An online service providing rebates and discounts on the
mission is to promote and fund research into finding
                                                                purchase of caregiving supplies and equipment.
the cause and cure for the frontotemporal dementias; to
provide information, education, and support to persons
                                                                      8801 West Heather Avenue
diagnosed with FTD and their families and caregivers;
                                                                      Milwaukee, WI 53224
and to educate physicians and allied health professionals
                                                                      (800) 888-0889
about FTD. For a brochure and newsletter:
                                                                      www.caregiversmarketplace.com
      1616 Walnut Street, Suite 1100
                                                                CARIE (Center for Advocacy for the Rights and
      Philadelphia, PA 19103
                                                                Interests of the Elderly)
      (267) 514-7721, (866) 507-7222
      www.ftd-picks.org                                         Provides free telephone consultation, which includes op-
                                                                tions counseling and problem resolution services to the
Project COPE                                                    older person, their caregivers and professionals.
A study designed to help caregivers learn new ways to man-
                                                                      100 N. 17th Street, Suite 600
age the challenges of caring for a loved one with Alzheimer’s
                                                                      Philadelphia, PA 19103
Disease or related dementia. Project COPE is sponsored
                                                                      (215) 545-5728 , (800) 356-3606
bu the Pennsylvania Department of Health Tobacco grant
                                                                      www.carie.org
funds as part of the Pennsylvania Center of Excellence in
Alzheimer’s Disease awarded to the Farber Institute for Neu-
                                                                Children of Aging Parents (CAPS)
rosciences at Jefferson.
                                                                A non-profit organization which establishes and facili-
AARP                                                            tates caregiver support groups, provides educational
                                                                outreach and information on available services to assist
Offers extensive information on and support for
                                                                caregivers.
caregiving, illness, grief, widowhood, funerals, wills,
estate planning and advance directives.
                                                                      PO Box 167
                                                                      Richboro, PA 18954
      601 E. Street NW
                                                                      (800) 227-7294
      Washington DC 20049
                                                                      www.CAPS4caregivers.org
      (888) 687-2277 (AARP)
      www.aarp.org/life or www.aarp.org/life/caregiving
                                                                Counseling for Caregivers, Madlyn and Leonard
                                                                Abramson Center for Jewish Life
The AIDS Library
                                                                (formerly Philadelphia Geriatric Center)
The AIDS Library serves the community through deliv-
                                                                Helps caregivers through information, referral, education
ery of information on HIV, including computer access to
                                                                and counseling find the skills and services they need to
the library’s online resource, Philadelphia Metropolitan
                                                                balance caring for their older relative with taking care of
Area Resources for Living with HIV. This web site offers an
                                                                themselves.
easily accessible and quite comprehensive source of HIV
      1245 Horsham Rd.                                          National Association for Home Care and Hospice
      North Wales, PA 19454                                     Provides information on what home care is and how
      (215) 371-3000, (888) 791-5075                            to select a provider. The web site includes a consumer
      www.abramsoncenter.org/pages/caregiving.html              section.

Crozer-Keystone Senior Health Services                                228 Seventh St, SE
A bridge to services available between hospitals and                  Washington DC, 20003
community agencies. A clinician will direct each caller to            (202) 547-7424
those services that will benefit them the most.                       www.nahc.org/Consumer/coninfo.html

      (800) 254-7539                                            National Association of Geriatric Care Managers
      www.crozer.org/CKHS/People/Seniors                        Provides a searchable database of geriatric care manag-
                                                                ers who are committed to maximizing the independence
Family Caregiver Alliance, National Center on Caregiving        and autonomy of elders while striving to ensure that the
Works to advance the development of high-quality                highest quality and most cost-effective health and human
cost-effective policies and programs for caregivers in every    services are used when and where appropriate. A compre-
state of the country. The Family Caregiver Alliance site has    hensive list of organizations serving the needs of elderly
specialized information on Alzheimer’s disease, stroke, trau-   and their caregivers can be found via the home page by
matic brain injury, Parkinson’s disease, ALS and other disor-   clicking on “Care Management Resources.”
ders. Some materials are available in Spanish and Chinese.
                                                                      1604 N. Country Club Road
      180 Montgomery St., Suite 1100                                  Tucson AZ 85716
      San Francisco, CA 94104                                         (520) 881-8008
      (800) 445-8106                                                  www.caremanager.org
      www.caregiver.org
                                                                National Family Caregivers Association
Geriatric Assessment                                            A grassroots organization created to educate, support,
Geriatric assessment differs from a standard medical            empower and speak up for the common needs and con-
evaluation and involves a team of health care                   cerns of all family caregivers.
professionals who evaluate the older person’s functional
abilities (ability to get around and do everyday activities),         10400 Connecticut Ave., Suite 500
physical health, memory abilities and mental health, as               Kensington, MD 20895
well as their social and environmental situation. The                 (800) 896-3650
potential benefits of having this type of assessment                  www.nfcacares.org
include greater diagnostic accuracy, improved function
and mental status, decreased use of hospitals and nursing       The National Hospice and Palliative Care Organization
homes and overall quality of life. Contact your local           NHPCO is the largest nonprofit membership organization
hospital to find a geriatric assessment program.                representing hospice and palliative care programs and
                                                                professionals in the United States. The organization is
Jewish Family and Children’s Services of Greater                committed to improving end-of-life care and expanding
Philadelphia                                                    access to hospice care with the goal of profoundly
JFCS provides information, referral, education, care man-       enhancing quality of life for people dying in America and
agement and counseling for caregivers to support them in        their loved ones. Provides information to better your
providing care to their relative, as well as to support them    understanding about hospice and palliative care and a
in maintaining their own health.                                national database for services near you.

      (866) 532-7669                                                  1700 Diagonal Road, Suite 625
      www.jfcsphilly.org, www.seniorhorizons.org                      Alexandria, Virginia 22314
                                                                      (703) 837-1500
National Alliance for Caregiving                                      www.nhpco.org
Supports family caregivers through resource guides and
information available online or in print. Web site is home      PhillyHealthInfo.org
of the AXA Foundation Family Resource Connection, a             PhillyHealthInfo.org, a project of the College of Physi-
searchable database of books, videos, web sites, etc. for       cians of Philadelphia, is a key component of the College’s
caregivers.                                                     mission to advance the cause of health while upholding
                                                                the ideals and heritage of medicine. PhillyHealthInfo.org
      4720 Montgomery Lane, 5th Floor                           seeks to empower citizens of southeastern Pennsylvania
      Bethesda, MD 20814                                        (encompassing Bucks, Chester, Delaware, Montgomery,
      www.caregiving.org                                        and Philadelphia Counties) to make better informed
health decisions by raising awareness of the health issues          www.aoa.gov/prof/aoaprog/caregiver/carefam
most affecting this region. By providing access, via the            /taking_care_of_others/wecare/wecare.asp
web, to credible health information and relevant health
resources within the Philadelphia region, PHI enables         Eldercare Locator
individuals, families, and communities to take greater        A nationwide service available toll free or on the Web
responsibility for their health.                              which helps older adults and their caregivers find local
                                                              services for seniors. The toll free Eldercare Locator service
      19 S. 22nd Street                                       operates Monday through Friday, 9:00AM to 8:00PM,
      Philadelphia, PA 19103                                  Eastern Time and can be reached at (800) 677-1116 or the
      (215) 563-3737 ext. 221                                 Eldercare Locator can be accessed via the internet at
      www.phillyhealthinfo.org
                                                                      www.eldercare.gov
Today’s Caregiver Magazine
Published on a monthly basis, this magazine and com-          Aging Parents and Adult Children Together (A/PACT)
panion website provides helpful information and resourc-      A series of 10 articles produced by the Federal Trade Com-
es for caregivers. There is a “Philadelphia” version avail-   mission in partnership with AARP. The series will intro-
able, as well as an annual Fearless Caregiver conference.     duce you to eldercare issues you may confront and help
                                                              investigate options and make decisions.
      3005 Greene Street
      Hollywood, FL 33020                                             www.feddesk.com/freehandbooks/1014-4.pdf
      (800) 829-2734
      www.caregiver.com                                       Medicare and Medicaid Services
                                                              The federal agency that oversees the Medicare, Medicaid
Well Spouse Association                                       and SCHIP programs. By calling, you can receive gen-
A national association of spousal caregivers whichh           eral information or get answers to specific questions on
sponsors peer support groups as well as online support        claims and coverage. Regional CMS resources are also
through the WSA Forum and a quarterly newsletter for          available.
long-term caregivers. Participants form friendships with
other caregivers in similar situations.                             (800) MEDICARE, (800) 633-4227
                                                                    www.medicare.gov
      63 West Main Street, Suite H
      Freehold, NJ 33020                                      National Institute on Aging — Resource Guide
      (800) 838-0879                                          for Older Persons
      www.wellspouse.org                                      A comprehensive directory of services and organizations
                                                              compiled by the NIA and the Administration on Aging.
Wellness Community of Philadelphia                            It contains listings of more than 250 public and private
Helps people affected by cancer enhance their health and      organizations.
well-being through participation in a free professional
program of emotional support, education, and hope.                  www.nia.nih.gov/resource
Programs at Ridgeland in Fairmount Park and limited off-
site programs in Chester County, the Bucks-Montgom-           Quality Improvement Organizations
ery County area, Hahnemann University Hospital, and           QIO’s investigate the quality of medical care received
throughout Philadelphia.                                      by Medicare beneficiaries, as well as investigate appeals
                                                              from beneficiaries or caregivers when they feel Medicare
                                                              services from an inpatient hospital, nursing home, home
                                                              health care agency, or comprehensive outpatient rehabili-
                                                              tation facility are being ended too soon. Residents need to
   U.S. GOVERNMENT RESOURCES                                  contact the Medicare Quality Improvement Organization
                                                              for the state in which they live when they want to file an
Administration on Aging Elderpage:                            appeal, quality of care complaint, or ask for more infor-
Information for Older Persons and Families and                mation.
Because We Care: A Guide for people who Care
 These guides provide information and a range of sugges-            Quality Insights of Delaware
tions to make caregiving easier and more successful—                Baynard Building, Suite 100
whether you are a caregiver or the person who ensures               3411 Silverside Road
that your family member or friend receives the best pos-            Wilmington, DE 19810
sible care from others.                                             (866) 475-9669
                                                                    www.qide.org
      www.aoa.dhhs.gov/elderfam/elderfam.asp
      Quality Insights of Pennsylvania                        coordinate all needed preventive, primary, acute and long
      Commerce Court Suite 320                                term care services so that an older individual can continue
      2601 Market Place Street                                living in the community. To be eligible for PACE a person
      Harrisburg, PA 17110                                    must be 55 or older, be certified by the state to need nurs-
      (877) 346-6180                                          ing home care and live in an area served by a PACE pro-
      www.qipa.org                                            gram. In Pennsylvania, this program is called LIFE ( Living
                                                              Independently for Elders), due to the pre-existing phar-
                                                              macy benefit program administered by the state also called
                                                              PACE. Further information on PACE and LIFE programs
                                                              can be found at the national web site:
         REGIONAL RESOURCES—PA
                                                                    (703) 535-1565
                                                                    www.npaonline.org
Area Agencies on Aging
Every county has an “area agency on aging” which offers             LIFE University of Penn School of Nursing
information and referral to hospice and support groups,             4508 Chestnut Street
mental health care, community-based long term care,                 Philadelphia, PA 19104
home delivered meals, caregiver support programs and                (215) 573-7200
other services.                                                     www.lifeupenn.org
      Philadelphia Corporation for Aging                            LIFE Saint Agnes
      642 N. Broad Street                                           1500 S. Columbus Boulevard
      Philadelphia, PA 19130                                        Philadelphia, PA 19147
      Senior Helpline                                               (215) 339-4747
      (215) 765-9040 , (215) 765-9041 (TDD)                         www.stagnesccc.org/services/LIFE.php
      www.pcaphl.org

      Bucks County Area Agency on Aging
      30 E. Oakland Ave.
      Doylestown, PA 18901
      (215) 348-0510                                                   REGIONAL RESOURCES—DE
      www.buckscountry.org/government/departments
      /humanservices/aging/index.aspx                         Cancer Care Connection
                                                              A free statewide service providing information, guidance
      Chester County Department of Aging Services             and referrals to help you find local services and Internet
      601 Westtown Rd., Suite 130                             resources.
      West Chester, PA 19380
      (610) 344-6350                                                1 Innovation Way, Suite 300
      www.chesco.org/aging                                          Delaware Technology Park
                                                                    Newark, DE 19711
      Delaware County Office of Services for the Aging              (302) 266-8050, (866) 266-7008
      (610) 490-1300, (800) 416-4504                                www.cancercareconnection.org
      www.delcosa.org
                                                              CARE Delaware
      Montgomery County Office of Aging and                   Assistance for caregivers is provided by Delaware Division
      Adult Services                                          of Services for Aging and Adults with Physical Disabilities
      1430 Dekalb Pike, Box 311                               (DSAAPD), including needs assessment and care plan-
      Norristown, PA 19404                                    ning, support groups and caregiver training, respite care
      (610) 278-3601                                          and community-based caregiver resource centers.
      http://mcaas.moncopa.org
                                                                    (800) 223-9074
      Berks County Office of Aging                                  (302) 453-3837 (TTY), (302) 255-4445 (Fax)
      633 Court Street                                              www.dhss.delaware.gov/dsaapd/care.html
      Reading, PA 19601
      (610) 478-6500                                          Caring Partners
      www.berksaging.org                                      A community initiative that links caregivers with services
                                                              and resources to help them in their caregiving roles. The
National PACE (Programs for All-inclusive Care for the        program includes personalized support through Care-
Elderly) Association                                          giver Resource Centers, their website as well as through
Programs for All-inclusive Care for the Elderly provide and   “Preparing for Caring” educational materials for new
caregivers and Caring Partners Coalition.

      1901 N. Market Street
      Wilmington, DE 19802
      (302) 651-3401
      www.caringpartnersde.org

Contact Lifeline
24-hour, 7 day/week crisis helpline for all problems,
staffed by trained volunteers who provide telephone sup-
port and referrals, including bereavement support groups
and grief counseling throughout the state.

      (800) 262-9800
      www.contactlifeline.org/contact.html




         REGIONAL RESOURCES—NJ
NJ EASE (New Jersey Easy Access, Single Entry)
Department of Health and Senior Services initiative in
partnership with county governments to provide a new
and easy way for senior citizens and their families to learn
about and obtain needed services.

      PO Box 360
      Trenton, NJ 08625
      (877) 222-3737
      www.nj.gov/health/senior/sanjease.shtml

Caregiver NJ
An online guide to information on a variety of caregiving
situations, resources and services available in New Jersey
to assist caregivers and searches for resources by county.

      PO Box 360
      Trenton, NJ 08625
      www.nj.gov/caregivernj

Community Choice Promoting Dignity, Independence
and Choice
Community Choice is a statewide program of the New
Jersey Department of Health and Senior Services created
to assure that senior citizens, persons with disabilities
and their families are aware of choices they have when
it comes to long term care. The ‘Useful Links’ section of
the web site contains a comprehensive list of national
and state organizations, organizations related to specific
diseases, advocacy groups, and associations for those in
different cultures.

      www.nj.gov/health/senior/choice

				
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