Webinar presented at the Social Dimensions of Health Institute (SDHI) of the Universities of Dundee and St Andrews on 19th April 2013

1. AGING AND COMPOUND
CAREGIVERS OF PEOPLE WITH
LEARNING DISABILITIES.
Dr. Elizabeth A. Perkins
Associate Director and
Research Assistant Professor
Webinar Presentation for
the Social Dimensions of Health Institute,
Universities of Dundee and St. Andrews.
April 18th, 2013.

2. 2
Overview
• Caregiving Research – a brief overview
• Specific issues of aging caregivers of people with
learning disabilities
• Compound caregiving case study
• Compound caregiving research
• What can we do to help caregivers?

3. “There are fours kinds of people in the world:
Those who have been caregivers, those who
currently are caregivers, those who will be
caregivers, and those who will need caregivers.”
Former First Lady Rosalynn Carter
Rosalynn Carter Institute for Caregiving
~ 1 in 5 Americans are currently engaged in an informal
caregiving role.
3

4. General Caregiving Research – An Overview
• Originally developed from concern of the challenges
encountered by caregivers of persons with Alzheimer’s
disease.
• Highly stressed caregivers are at risk for poorer physical
and psychological health outcomes.
• Time devoted to caregiving can also affect financial
stability, employment opportunities, availability for
other relationships.
• Caregivers can sometimes experience role captivity.
4

5. General Caregiving Research – An Overview
• Does have benefits, can reconnect or strengthen a
relationship.
• Can be personally rewarding and boost self-esteem.
• Allows the care recipient to enjoy individualized
attention in their home environment.
5

6. 6
(from Perkins, Lynn, & Haley, 2007).
Stress
Coping
Caregiving: A Balancing Act

7. Residential Status of
People with LD in the USA
Independent/family settings (88%) Supervised Residential Setting (12%)
With Family Caregivers Group Homes
Independent/Supported
living
Intermediate Care
Facilities/DD
With Spouse Skilled Nursing Facilities
State Institutional Facilities
(cited in Braddock et al., 2008., The State of the States in Developmental Disabilities).

8. Age Groups of Family Caregivers
8
35%
40%
25%
Age < 41
Age 41-59
Age 60 +
~ 3 million family caregivers of people with LD
716,212
1, 118,027
991,114
(Braddock et al., 2008)

9. Haley, W. E., & Perkins, E. A. (2004). Current status and future directions in family caregiving and aging
people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1, 24-30.
Perkins, E. A., & Moran, J. A. (2010). Aging adults with intellectual disabilities. Journal of the American
Medical Association, 304(1), 91-92.
9
Concerns
1. Extensive duration of caregiving role
2. Health care concerns due to aging in care recipient/care giver
3. Fears about the long-term future of the care recipient
What makes Caregivers of Adults with
Learning Disabilities unique?
Benefits
1. Normative nature of parental caregiving
2. Expertise and feelings of mastery from long term caregiving

10. Distinctive Concerns of Aging
Family Caregivers of Adults with LD
1. Extensive duration of caregiving role (Haley & Perkins,
2004)
- Caregiving for ill spouse or parent with a chronic illness – average 4.5
years.
- Caregiving for a child with ID can be a prolonged endeavor lasting up
to 50 years or more. A lifelong career.
- Often referred to as “perpetual parents”. Captive or captivated?
(Todd & Shearn, 1996)
- Captive parents experience higher levels of parental stress and
pessimism (Walden, Pistrang & Joyce, 2000).

11. 2. Health care concerns due to aging in the caregiver and
care recipient (Haley & Perkins, 2004)
- Aging with ID presents additional challenges
secondary to the pre-existing
intellectual/developmental disability.
- In particular, persons with Down syndrome,
Cerebral Palsy, and Prader-Willi syndrome have
particular medical issues associated with aging.
Distinctive Concerns of Aging Family
Caregivers of Adults with LD

12. - A study of aging women caregivers (N = 208, aged 40+)
compared with general population data found that caregivers
reported higher prevalence of:
Osteoarthritis
High blood pressure
Obesity
Activity limitation (e.g. carrying groceries, climbing stairs,
walking several blocks).
However, despite poorer health outcomes, the caregivers of
people with LD generally rated their health status more
favorably!
12
(Yamaki, Hsieh, & Heller, 2009).
With increasing age, caregivers are also increasingly likely to
develop chronic disease and impairments.

13. Potentially Beneficial Factors for Aging
Family Caregivers of Adults with LD
1. Normative nature of parental caregiving (Haley &
Perkins, 2004)
Natural and familiar parenting role, rather than spouses and children who
find themselves caring for newly dependent family members.
No new role dynamics to contend with.
2. Expertise and feelings of mastery from long term caregiving
(Haley & Perkins, 2004)
Gaining expertise from long term caregiving may reduce feelings of
burden overtime.
Studies have shown reduced burden in older parents with adult children
aged 30+ compared to younger parents (Heller, Rowitz & Farber, 1992).

14. Case Study – Compound Caregiver
Perkins, E. A. (2010). The compound caregiver: A case study of
multiple caregiving roles. Clinical Gerontologist, 33, 248-254.
- Adults with LD have increased life expectancies, and are now more
likely to outlive their parents.
- Greater chance of becoming a sandwich caregiver (i.e. caregiving
for an older parent) (Rogerson & Kim, 2005).
- There is also the possibility that these primary caregivers may also
undertake additional caregiving duties to other family members
(e.g. in-laws, spouse, and siblings).
- These multiple caregivers are “compound caregivers” – as they
have “compounded” caregiving duties!
14

15. 15
“Kay”, age 60, mother and primary caregiver to son Derek.
“Derek”, age 28, has Down syndrome, severe learning
disabilities, lupus, and requires considerable support with all
activities of daily living. He has resided with his family since
birth.
Kay became a caregiver to her mother-in-law, father, sister, and
lastly, her mother, over the course of the last 17 years.
Although each additional caregiving episode was relatively brief,
she described these periods as some of the most stressful times
in her life.
Case Study – Compound Caregivers

16. 16
1st Compound Caregiving Episode
Care recipient: Mother-in-Law
Care recipient diagnosis: Terminal Lung Cancer
Duration: 2 months
Location: Hospital
“It was heartbreaking to us that we were never able to care for her within our
home. In some ways, it would have been less arduous a situation, as we always
needed someone there to watch Derek. We were exhausted trying to keep up
on the home front as well as keeping hospital duty afloat.”
2nd Compound Caregiving Episode
Care recipient: Father
Care recipient diagnosis: Stroke
Duration: 9 months
Location: Father’s home
“My father was now like my son. Our own support system was diminishing
before our eyes.”

17. 17
3rd Compound Caregiving Episode
Care recipient: Sister
Care recipient diagnosis: Terminal Breast Cancer
Duration: 6 months
Location: Sister’s home
“Providing for my sister’s needs caused our family to have to dig
deep to keep our bearings.”
“We had to make adjustments, and be flexible, for when my
mother’s caregiving involvement decreased, she helped out more
with Derek, so I could be more available for my sister.”

18. 18
4th Compound Caregiving Episode
Care recipient: Mother
Diagnosis: Compression fracture of spine/anemia/fractured hip
Duration: 9 months
Locations: Mother’s Home, Kay’s Home, Hospital
“I was unprepared for the extraordinary burden this season of
additional caregiving was presenting.
The stress of the final five months of my mother’s life created
repercussions from which I still struggle.
My role as wife, and mother/caregiver to Derek was completely
displaced by my mother’s needs. When I think back now, I realize
that I was apprehensive about acknowledging that I needed help,
let alone asking for it.”

19. 19
Most Notable Issues:
1) Reduction in Social Support
A person who previously was source of social support to the caregiver,
becomes an additional care recipient.
2) Difficulty in Prioritizing Caregiving Demands
Difficult choices may have to be made when prioritizing competing
caregiving demands that can cause distress to the compound caregiver.
3) Reduction in Stress Resiliency
Cumulative effect of depleting one’s coping resources may jeopardize
the caregiver’s ability to continue their primary caregiving role.

20. Aging Caregiver Study
• Cross-sectional, primary data collection
• Sample N = 91 parental caregivers
• Aged 50+ with co-residing son/daughter with ID aged 18+
• Convenience sample drawn from various agencies, website
recruitment, and parent-to-parent referral
• Caregivers from various states participated:
Florida (78), New Jersey (5), Georgia (4), Maryland (1),
Oklahoma (1) South Dakota (1), Nevada (1).
Perkins , E. A. & Haley, W. E. (2010). Compound caregiving: when lifelong caregivers
undertake additional caregiving roles. Rehabilitation Psychology, 55, 409-417.

21. Caregiver Study
1) How common is compound caregiving?
2) Does compound caregiving status impact physical and
mental well-being of compound caregivers compared
with non-compound caregivers?
Perkins , E. A. & Haley, W. E. (2010). Compound caregiving: when lifelong caregivers
undertake additional caregiving roles. Rehabilitation Psychology, 55, 409-417.
21

22. Compound Caregiving Variables
Compound caregiving status:
Determined by response to the question
Do you currently have any other caregiving responsibilities
to another family member other than your son/daughter
with ID?
Relationship to the compound care recipient.
Major health issue that prompted caregiving duties.

23. 23
 Global Physical Health (Physical Component Score of SF-36;
Ware & Sherbourne, 1992; α = .91).
 Global Mental Health (Mental Component Score of SF-36;
Ware & Sherbourne, 1992; α = .87).
 Depressive Symptomatology (Center for Epidemiological
Studies – Depression, (CES-D); Radloff, 1977; α = .89).
 Life Satisfaction (Life Satisfaction Index – Z, Wood et al., 1969;
α = .77).
 Desire for Residential Placement (Morycz, 1985).
Measures (Outcome Variables)

24. Mean or
%
SD Range
Caregiver Characteristics
Demographic
Age (years) 60.8 8.5 50 – 92
Education (years)* (note 12 years = high school) 15.1 2.4 12 – 22
Gender (Female) 91%
Caregiving
Total caregiving hours per week 39.4 21.3 7 – 88
Compound Caregiver Now (Yes) 37%
Compound Caregiver Ever (Yes) 68%
Anticipated Future Caregiving (Yes) 34%
Duration of compound caregiving (months) 36 *
24
*note-12 years = high school, 16 years = college * Median

25. Compound
Caregiver
Non-Compound
Caregiver
M SD M SD t
Caregiver Characteristics
Demographic
Age (years) 58.8 7.9 61.1 8.9 1.22
Education 14.7 2.29 15.4 2.53 1.26
Health and Caregiving
Total Comorbidities 4.79 2.96 5.42 3.01 .97
Comorbidity Interference 8.68 8.66 9.52 7.47 .494
Total Caregiving Hours 38.66 20.82 39.84 21.89 .253
Caregiving Hours + CCGa hours 51.60 26.34 39.84 21.88 -2.30*
25
a CCG = Compound caregiving * p< .05 (2-tailed).

26. Compound
Caregiver
Non-Compound
Caregiver
M SD M SD t
Life Satisfaction 17.05 5.81 17.58 7.03 .36
Depression 10.94 9.30 12.61 9.65 .85
Physical Health 44.51 11.28 43.09 10.07 -.62
Mental Health 47.66 11.22 48.67 11.53 .41
Desire to Place 3.61 1.72 2.49 1.63 -3.11*
Caregivers (57) and Compound Caregivers (34)
* p< .01 (2-tailed).

27. Relationship to Caregiver N %
Mother 13 (38.2%)
Father 4 (11.8%)
Spouse 4 (11.8%)
Sibling 3 (8.8%)
Aunt/Uncle 3 (8.8%)
2nd Child with Intellectual Disability 3 (8.8%)
Mother in Law 2 (5.85%)
Grandchild with Medical Needs 1 (2.9%)
Major Health Issue of Compound Care Recipient
Alzheimer’s Disease 7 (20.6%)
Elderly Frail 4 (11.8%)
Advanced Macular Degeneration 4 (11.8%)
Cardiovascular Disease 4 (11.8%)
Intellectual Disability 4 (11.8%)
Parkinson’s Disease 2 (5.9%)
Cancer 2 (5.9%)
Chronic Mental Disorder 2 (5.9%)
Hip Fracture/Replacement 2 (5.9%)
Stroke 1 (2.9%)
Diabetes 1 (2.9%)
Post-Operative Convalescence 1 (2.9%)
27

28. Discussion
• Compound caregivers – increased desire to place – caring for
another relative might galvanize discussions of “What
happens if I become sick?”
• Compound caregivers not significantly different to non-
compound caregivers in the other quality of life outcomes.
Why little difference?
- Knowledge and mastery of caregiving roles, easy adaptation,
natural self-selection.
- However, caregivers may also minimize impact of compound
caregiving as a coping mechanism.
28

29. • 5 “Triple” caregivers i.e. currently looking after 2 others
care recipients plus their son/daughter with intellectual
disabilities (e.g. one caregiver was caring for her
daughter, a mother with Alzheimer’s disease, and a father
with Parkinson’s disease).
• Depression - 18.2 (12.0 for the sample)
• Life Satisfaction 12.4 - (17.4 for the sample)
29
Multiple Compound Caregiving
– A More Serious Concern?

30. 30
I feel bad that my time is taken up with my
many caregiving duties – it stops me from
being able to encourage my son to do
more.
My biggest problem is how do I
integrate my son into all the demands
of my caregiving roles.
I feel anxiety and resentment
simultaneously dealing with my
husband’s issues – it has affected the
quality of my marital relationship.
A difficult problem is having the
responsibility of running all the
maintenance of the home...it’s all new
to me.
You need to be adaptable at juggling all
aspects of your life.
I feel guilty that I am not able to
spend quality time with my other
children, and guilty that I need their
help.
A Selection of Quotes from Compound Caregivers

31. White Paper – Policy Recommendations
- Stresses importance of care
coordination that is
responsive to changing
caregiver demands.
- The need for coordinated
respite care.
- Using age alone as a basis for
caregiver categories to
prioritize support services is
likely to overlook difficulties
faced by compound
caregivers.
31
http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf

32. Use of Online Social Support?
• There is a still relative paucity of information
regarding support on the Internet for caregivers
who care for people with IDD
• The utility of the internet is evident particularly when
logistical constraints and lack of in-person support
groups are considered.
• However, caution is also advised as group dynamics
can result in the perpetuation of inaccurate myths
and information.
32
Perkins, E. A., & LaMartin, K. M. (2012). The internet as social support for older carers
of adults with intellectual disabilities. Journal of Policy and Practice in Intellectual
Disabilities, 9, 53-62.

33. How can we support caregivers?
• Utilize and embrace the unique knowledge and
expertise the caregiver has.
• Promote collaboration and discussion of caregiving
issues with all family members (e.g. siblings) to
encourage fair distribution of caregiving duties.
• Encourage use of available services and options (e.g.
home help, companion services).
• Encourage building/strengthening of informal
network – friends, other parents/caregivers, local
community resources, online communities.
33

34. • Encourage caregivers to participate in
family/parent or caregiver support groups
including online communities.
• Use respite care, and encourage “me” time – a
regularly scheduled activity that the caregiver truly
enjoys.
• Encourage caregivers to be more aware of their
health, and stress and not neglect or overlook
their own healthcare needs.
34
How can we support caregivers?

35. 35
Don’t Delay.......
Start to make those plans.....
What if’s
Who with
Where
Finances
http://sonoranucedd.fcm.arizona.edu/sites/sonoranucedd.fcm.arizona.edu/files/CAREGIVING
_Roadmap_021010.pdf
Imperative to encourage caregivers
to make future plans

36. The Future is Now!
The Future is Now: A Future Planning Training Curriculum for Families and
Their Adult Relatives with Developmental Disabilities.
Factor, A., Debrine, E., Caldwell, J., Arnold, K., Kramer, J., Nelis, T., & Heller, T.
(2010). 3rd Edition
This curriculum helps families to plan and prepare a letter of intent that lays
out their dreams for the future and identifies the steps required to
transform this dream into a reality.
36
Contains updated and expanded resource lists!
http://www.rrtcadd.org/blog/files/c640b98a22c0251fd9d4ea8f1e8f615b-5.html

37. Easing Your Stress Guide
37
English version www.fddc.org/news/publications-easing-your-stress
Spanish version www.fddc.org/news/publications-aliviando-su-estres
Free booklet by the
Florida Developmental Disabilities Council
Aimed specifically at caregivers of people
with developmental disabilities.
Includes description of stress, and
guidelines on how to ease stress.
“Be positively selfish by doings things for yourself.”
Remember: Stress is a reaction to an event rather than the event itself.”

38. 38
A Tale of Triumph and New Transitions
Artist: Win Hammer

39. Education for
Lifelong Health Series
39
http://flfcic.fmhi.usf.edu/program-areas/health.html under the materials and resources tab.

40. Contact Information:
Dr. Elizabeth Perkins
Associate Director/Research Assistant Professor
Florida Center for Inclusive Communities/UCEDD
University of South Florida, Tampa, Florida, USA.
Email:- eperkins@usf.edu
Tel: (813) 974 7076
www.flcic.org
http://flfcic.fmhi.usf.edu/projects/health.htm
If you would like reprints of, or further information about any my publications (bold in the reference list),
please do not hesitate to email me!
Member-At-Large, Board of Directors, American Association on Intellectual and Developmental Disabilities
FCIC Representative, Florida Developmental Disabilities Council
Advisory Board - Disability and Health Program, Florida Department of Health
40

41. References
Braddock, D., Hemp, R., & Rizzolo, M.C. (2008). The state of the states in
developmental disabilities: 2008. Washington, DC: American Association
on Intellectual and Developmental Disabilities.
Haley, W. E., & Perkins, E. A. (2004). Current status and future directions in
family caregiving and aging people with intellectual disabilities. Journal
of Policy and Practice in Intellectual Disabilities, 1, 24-30.
Heller, T., Rowitz, L., & Farber, B. (1992). The domestic cycle of families of
persons with mental retardation (Rep.). Chicago, IL: University of Illinois
at Chicago, Affiliated Program in Developmental Disabilities and School of
Public Health.
Perkins, E. A. (2010). The compound caregiver: A case study of multiple
caregiving roles. Clinical Gerontologist, 33, 248-254.
Perkins, E. A. (2011). Compound caregivers: overlooked and overburdened
[White paper]. Tampa, Florida: University of South Florida, Florida Center
for Inclusive Communities.
http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf
41

42. References
42
Perkins, E. A. & Haley, W. E. (2010). Compound caregiving: when lifelong
caregivers undertake additional caregiving roles. Rehabilitation
Psychology, 55, 409-417.
Perkins, E. A., & LaMartin, K. M. (2012). The internet as social support for
older carers of adults with intellectual disabilities. Journal of Policy and
Practice in Intellectual Disabilities, 9, 53-62.
Perkins, E. A., Lynn, N., & Haley, W. E. (2007). Caregiver issues associated with
wandering. In A. L. Nelson & D. L. Algase (Eds.) Evidence based protocols
for managing wandering behaviors. (pp. 123-142). New York: Springer.
Perkins, E. A., & Moran, J. A. (2010). Aging adults with intellectual disabilities.
Journal of the American Medical Association, 304(1), 91-92.
Rogerson, P. A., & Kim, D. (2005). Population distribution and redistribution of
the baby-boom cohort in the United States: Recent trends and implications.
Proceedings of the National Academy of Sciences, 102, 15319-24.

43. References
43
Saxon, S.V., Etten, M. J., & Perkins, E. A. (2010). Physical Change and Aging: A
Guide for the Helping Professions (5th ed). New York: Springer.
Todd, S., & Shearn, J. (1996). Time and the person: Impact of support services on
the lives of parents of adults with intellectual disabilities. Journal of Applied
Research in Intellectual Disabilities, 9, 40-60.
Walden, S., Pistrang, N., & Joyce, T. (2000). Parents of adults with intellectual
disabilities:Quality of life and experiences of caring. Journal of Applied
Research in Intellectual Disabilities, 13, 62-76.
Yamaki, K., Hsieh, K., & Heller, T. (2009). Health profile of female caregivers
supporting adults with intellectual disabilities at home. Intellectual and
Developmental Disabilities, 47(6), pp. 425-435.

44. 44
Saxon, S.V., Etten, M. J., & Perkins, E. A. (2010).
Physical Change and Aging: A Guide for the Helping
Professions (5th ed). New York: Springer.
This 500 page book provides a comprehensive
overview of the aging process, describes
common aging-related conditions/diseases and
also includes chapters on caregiving, and aging
with lifelong disabilities.