Dyadic Interventions for Family Caregivers and Care
Receivers in Early-Stage Dementia
Carol J. Whitlatch, PhD
Heather L. Menne, PhD
Margaret Blenkner Research Institute
Benjamin Rose Institute
11900 Fairhill Road
Suite 300
Cleveland OH 44120
[email protected]
[email protected]
3 june 2009
2009 Alzheimer’s Disease Supportive Services Program (ADSSP)
Annual Grantees and Partners Meeting
Arlington, Virginia
This presentation is made possible by grants from the Administration on Aging (90CG2566; 90AI0004; 90AE0329), National
Institute on Aging (P50 AG-08012), National Institute of Mental Health (RO1-MH070629), and The Retirement Research
Foundation.
Background
• Care partners (caregivers and care receivers) are concerned
with each other’s well being, BUT they do not always know
each other’s preferences for care.
• Developing a mutual understanding about preferences for
personal care, living arrangements, and the use of formal
services plays an important role in the ability of care
partners to make crucial care decisions throughout the
course of dementia.
• Persons with mild to moderate levels of cognitive loss:
1) can answer questions with a high degree of reliability and
validity; 2) can contribute and participate actively in
research interviews; and 3) have strong opinions about their
care preferences.
• Increasingly, research is emphasizing the importance of
including input from both care partners.
Obstacles And Benefits To Intervening With Both Care
Partners
• OBSTACLES
• BENEFITS
 Access
 A systems approach
 Confidentiality
 A holistic approach
 Privacy
 Fear of losing
services
 Cognitively and physically
impaired persons can
contribute
 Lack of instruments
that assess both
 Caregivers don’t always
know what relatives want
 Reimbursement can
be problematic
 Empowers both caregiver
and care receiver
Early Diagnosis Dyadic Intervention: Goals
•
•
•
•
Help care partners develop positive communication
patterns
Increase the care partners’ knowledge and
understanding of available services, care values, and
preferences for care
Increase the active participation of persons with earlystage dementia (PWESDs) in his/her care plan
Improve care partners’ well being and sense of selfefficacy in managing disease related issues
Early Stage Dyadic Intervention
Session
Type
Session Goals & Objectives
1. Information
(PLAN)
Joint
• Learn about changes that occur memory loss
• Learn about communication skills
• Learn about services that are available
• Discuss the importance of future planning
2. Care Values 1
Individual
• Explore individual care values
• Begin process of planning for needs of PWESD
3. Care Values 2
Joint
• Openly discuss care values
• Use communication skills to discuss care values
• Begin joint planning for the needs of PWESD
4. Care
Preferences 1
Individual
• Discuss memory loss changes
• Discuss indiv. care preferences: formal/informal
• Think about the preferences of the other
• Discuss ways to share preferences with partner
Dyadic Intervention (cont’d)
Session
Type
Session Goals & Objectives
5. Care Preferences
2&3
Individual
& Joint
• Probe more into individual preferences
• Talk together about consequences of memory loss
• Discuss similarities and differences in care prefs.
• Try to reach agreement/understanding of prefs.
6. Challenges 1 & 2
Individual
& Joint
• Review care preferences
• Examine sources of formal & informal help
• Identify barriers & solutions to getting help
• Jointly discuss care preferences
• Jointly explore barriers & identify solutions
Final Review
Joint
• Review past discussions
• Identify unresolved issues
• Review where they can get the help they need
Results from EDDI
Process Results
• Both care partners were accepting of EDDI and able to engage
in discussions about the care process
• Visual aids were helpful
• PWESD could complete most or all of the interview and
intervention
Outcomes
• Care partners were able to participate without experiencing
more strain or worsening of mood or depressive symptoms
• Satisfaction for EDDI was generally higher than for the control
group
• Well-being generally improved for both members of the EDDI
dyads, as compared to the control group
“Everything is so new. I’m
just getting used to his
different moods. I can’t keep
up with them sometimes.
Thank God I’m here to do it.
I worry what would happen to
him if I weren’t here.”
Wife who cares for her husband with
Alzheimer’s Disease
“[I] liked everything about the this session (#1). It was the
first opportunity I had to talk with a counselor about my
problem.”
Husband with dementia who is cared for by his wife
Development of the Circles Diagram
• Care partners who participated in our early dyad
research commented that our questions made them
realize that they needed to talk about care preferences
with their relative.
• Designed to help care partners think about and discuss
their expectations for current and future care.
• Visual presentation and manipulation of magnets that
represent various care tasks empowers the care
receiver and helps both care partners recognize
imbalance of preferences.
Care Preferences: Care Receiver
Who would you prefer to help you with…?






Bathing
Toileting
Getting in/out of bed
Housework
Cooking
Legal/financial matters






Laundry
Transportation
Hobbies
Help at night
Feeling bored
When alone
Care Preferences: Caregiver about the
Care Receiver
Who do you think your relative would prefer to
help him/her with…?






Bathing
Toileting
Getting in/out of bed
Housework
Cooking
Legal/financial matters






Laundry
Transportation
Hobbies
Help at night
Feeling bored
When alone
Care Preferences: Caregiver
Who would you prefer to help your relative
with…?






Bathing
Toileting
Getting in/out of bed
Housework
Cooking
Legal/financial matters






Laundry
Transportation
Hobbies
Help at night
Feeling bored
When alone
Circles Diagram
Who would you prefer to help you/your relative
with…?
Caregiver
Family & Friends
Formal Service
Providers
Circles Diagram
Who would you prefer to help you/your relative
with…?
Caregiver
CR Preference
Both Prefer
• Toileting
• Bathing
• Cooking
• Housework
• Laundry
• Hobbies
•Feeling bored • Transportation • Help at night
• When alone
• Getting in/ • Legal/ financial
out of bed
matters**
Family & Friends
CGPreference
Preference
CG
Feelingbored
bored
••Feeling
• When alone
• When alone
Formal Service
Providers
CG Preference
• Toileting
• Housework
• Legal/ financial
matters**
Future Directions
• Using the Circles Diagram with families not facing
issues related to cognitive impairment.
• Use of the Circles Diagram in one-on-one discussions
with clients to help them prioritize and identify areas
of concern.
• Expand the listing of care values and preferences that
are considered:
• Safety concerns
• Money issues
• Improve and further develop measures to assess both
care partners.
Future Directions (cont’d)
• Reinforce the importance of continued engagement in
decision making for the older adult/impaired
individual, taking into account the context of the
relationship and the caregiver’s needs and preferences.
• Continue to identify ways to balance the needs and
priorities of both care partners.
There is much to be learned about interventions and
techniques that help caregiving family members.
References
Whitlatch, C.J., Judge, K., Zarit, S.H., & Femia, E. (2006).
Dyadic intervention for family caregivers and care
receivers in early-stage dementia. The Gerontologist,
46(5), 688-694.
Whitlatch, C.J. & Menne, H.L. (In press). Don’t forget
about me: Decision making by persons with dementia.
Generations.
Margaret Blenkner Research Institute
Established in 1961, the Margaret Blenkner Research Institute of
the Benjamin Rose Institute conducts applied aging research to
enhance the lives of older adults and those who care for them.
MBRI shares its knowledge with local, national, and international
audiences. MBRI’s current program focuses on four major topics:
Services and Interventions; Family Caregiving; Quality of LongTerm-Care Services; and Program Evaluation.