Presentation Minnesota Age and Disabilities

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					Counseling Family Caregivers
        to Optimize
      Family Support

 Family Memory Care Program

            Terry Barclay, PhD
         Kristine Dwyer, LSW, MS
    Heidi Haley-Franklin, MSW, LICSW
                       Partners
1) New York University         3) Minnesota Board on
  –   Mary Mittelman, DrPH &      Aging
      Cynthia Epstein, CSW


2) Federal Admin on            4) Alzheimer’s
   Aging                          Association
  – Alzheimer’s Disease          – Minnesota/North Dakota
    Support Services Program       Chapter
     10 Sites Across Minnesota
Metropolitan AAA                    Arrowhead AAA
   Volunteers of America,             Carlton County Public Health
    Minneapolis                        Range Respite
   Alzheimer’s Association Metro      Northwoods Hospice/Respite
    Regional Office                     Partners

MN River AAA                        Central MN AAA
   Mayo Health System                 Rural Stearns Faith-In-Action
     – Waseca Clinic
     – Madelia Clinic
     – Immanuel St Joseph’s         Southeastern MN AAA
                                       Mower County Caregiver
                                        Support Program
AAA Regions




      Minnesota Tribes
      Bois Forte
      Grand Portage
      Leech Lake
      White Earth
      Red Lake
      Fond du Lac




                         3/11/2010
                 Original Study
   New York University
    – Spouse Caregiver Intervention 1987-2009
    – Mary Mittelman, DrPH & Cynthia Epstein, CSW
   Randomized controlled trial
    – Test the efficacy of counseling and support for family
      caregivers
    – Evidence-based model
   406 spouse-caregivers of people with
    Alzheimer’s disease
    – All living with the person with AD at intake with at
      least 1 close relative in the area
                The Intervention
 First of 3 grants awarded in 2007, project began in
  2008
 Within 4 to 6 months:
    –   Assessment
    –   Initial individual counseling session
    –   4 family counseling sessions
    –   Second individual counseling session
   Over the entire course of the disease:
    – Participation in a support group
    – Telephone consultation for caregiver or family member
        as needed
Time to Nursing Home Placement of Patients Is Delayed by
          Counseling and Support of Caregivers
                                           1
  Probability of nursing home placement




                                          0.8


                                          0.6


                                                                                                                  Median difference
                                          0.4                                                                       = 557 days

                                                                                                                        Treatment
                                          0.2                                                                           Usual Care


                                           0
                                                0   1   2        3        4       5       6        7       8        9      10     11   12
                                                                                Years of follow -up




                                                            Mittelman MS; Haley, WE; Clay, OJ and Roth, DL: Neurology, 2006.
    Proposed Outcomes for MN
   Reduced negative impact (burden) from care
    giving
   Decreased level of depression
 Enhanced and widened network of support
   – Family, friends, neighbors, people from
     community, church members, etc.
 Average 18 month delay in nursing home
  placement
            Program Progress
   147 spousal caregivers enrolled as of January 31,
    2011
    – 95 have completed the intervention
    – 23 are in the process of completing
   Drop out rate is 20%, similar to the original
    intervention
    – Primary reasons for failure to complete include death of
      care receiver or caregiver, NH placement, or failure to
      respond to repeated contacts.
            Program Progress
 96% of responding caregivers indicate that
  participation is helpful
 Other outcomes achieved:
    – Reduction in depression
    – Reduced negative impact of care receiver behaviors
    – Enhanced support network effectiveness and
      composition
    – Reduced burden
             Common Themes
   Dementia knowledge, education
   Social support and respite
   Emotional health and coping
   Role changes
   Family dynamics and cohesion
   Communication
   Physical health
   Support for PWD
   Challenging behaviors
   Planning for the future
          Emotional Health and
            Coping Vignette
Being a caregiver can lead to increased potential for symptoms of
   depression , burden, and isolation.
Goal:
   Reduce symptoms of these variables so caregivers can cope better with
   the responsibilities of caring for someone with dementia.
Family:
   Samuel (84 yo) husband caring for wife (82 yo) with moderate
   Alzheimer’s disease. Samuel scored high on CESD screen and high
   burden scores. Couple has 3 local children. Couple isolated due to
   incontinence concerns.
Strategies:
   Family Memory Care & Support Group
   Talk with MD
   Community Activities, ADC, and Family Involvement
          Support System Vignette
• Social support may include both formal and informal resources
• Goals:
    • Widen and deepen circle of support
    • Identify the support tasks that can be provided by each support entity
• Family:
    • Phyllis (78), lives with spouse (79) with AD in a rural county
    • 6 adult children, 2 are local, 3 in-state, 1 out-of-state

Reliance upon:
• Siblings, adult children and spouses, and grandchildren
• Neighbors and friends
• Church family
• Adult day program
• Professionals (Human Service and Medical)
• Support group
• Participation in Family Memory Program
          Engagement & Family
           Dynamics Vignette
“The whole is greater than the sum of its parts”—Family Systems Theory
Goal:
   Engage the family in having a greater understanding about dementia
   and facilitate positive communication by creating short and long-term
   planning. Sometimes have to rely on “common goals.”
Family:
   Mabel (82 yo) wife with Parkinson’s caring for spouse (86 yo) with
   moderate Alzheimer’s disease (2nd marriage for both). 7 kids (4 his, 3
   hers), all with differing opinions (“observed care giving”)
Strategies:
   Family Memory Care & Meeting of the Minds
   All agreed that each parent deserved to be healthy, happy, and safe.
   “Uneasy Caregiving Alliance”
              Role Change Vignette
   Changes in person with AD alter the nature of roles within the relationship
     – marriage partnership, intimacy, allowing others in to help

   Caregivers will progressively need to assume new roles previously filled by
    the person with AD
   May be difficult to strike a balance between maintaining spouses autonomy
    and stepping in to avoid problems
   Kathy (62) caring for husband (68), no children or close family

Roles Changes:
   “Head” of the household
   Wife to fulltime caregiver
   Financial manager
   Meal planner, cook
   Driver
   Pharmacist
   Home maintenance coordinator
   Social planner
Discussion
 Q&A

				
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