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
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

                 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
    – 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
 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
  Probability of nursing home placement



                                                                                                                  Median difference
                                          0.4                                                                       = 557 days

                                          0.2                                                                           Usual Care

                                                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
   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
            Program Progress
   147 spousal caregivers enrolled as of January 31,
    – 95 have completed the intervention
    – 23 are in the process of completing
   Drop out rate is 20%, similar to the original
    – 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
    – 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.
   Reduce symptoms of these variables so caregivers can cope better with
   the responsibilities of caring for someone with dementia.
   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.
   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
   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.”
   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”)
   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

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