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

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?

“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

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

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

(from Perkins, Lynn, & Haley, 2007).

Stress

Coping

Caregiving: A Balancing Act

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).

Age Groups of Family Caregivers

8

35%

40%25%

Age < 41Age 41-59Age 60 +

~ 3 million family caregivers of people with LD

716,212 1, 118,027

991,114

(Braddock et al., 2008)

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

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).

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

- 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.

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).

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

“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

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

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

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

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.

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.

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

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

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)

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

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).

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).

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

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

• 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

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

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

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.

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

• 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

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

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

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

A Tale of Triumph and New Transitions

Artist: Win Hammer

Education for Lifelong Health Series

39

http://flfcic.fmhi.usf.edu/program-areas/health.html under the materials and resources tab.

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

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

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.

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

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.