AGING AND COMPOUNDCAREGIVERS OF PEOPLE WITHLEARNING DISABILITIES.Dr. Elizabeth A. PerkinsAssociate Director andResearch Assistant ProfessorWebinar Presentation forthe Social Dimensions of Health Institute,Universities of Dundee and St. Andrews.April 18th, 2013.
2Overview• Caregiving Research – a brief overview• Specific issues of aging caregivers of people withlearning 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 whocurrently are caregivers, those who will becaregivers, and those who will need caregivers.”Former First Lady Rosalynn CarterRosalynn Carter Institute for Caregiving~ 1 in 5 Americans are currently engaged in an informalcaregiving role.3
General Caregiving Research – An Overview• Originally developed from concern of the challengesencountered by caregivers of persons with Alzheimer’sdisease.• Highly stressed caregivers are at risk for poorer physicaland psychological health outcomes.• Time devoted to caregiving can also affect financialstability, employment opportunities, availability forother relationships.• Caregivers can sometimes experience role captivity.4
General Caregiving Research – An Overview• Does have benefits, can reconnect or strengthen arelationship.• Can be personally rewarding and boost self-esteem.• Allows the care recipient to enjoy individualizedattention in their home environment.5
6(from Perkins, Lynn, & Haley, 2007).StressCopingCaregiving: A Balancing Act
Residential Status ofPeople with LD in the USAIndependent/family settings (88%) Supervised Residential Setting (12%)With Family Caregivers Group HomesIndependent/SupportedlivingIntermediate CareFacilities/DDWith Spouse Skilled Nursing FacilitiesState Institutional Facilities(cited in Braddock et al., 2008., The State of the States in Developmental Disabilities).
Age Groups of Family Caregivers835%40%25%Age < 41Age 41-59Age 60 +~ 3 million family caregivers of people with LD716,2121, 118,027991,114(Braddock et al., 2008)
Haley, W. E., & Perkins, E. A. (2004). Current status and future directions in family caregiving and agingpeople 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 AmericanMedical Association, 304(1), 91-92.9Concerns1. Extensive duration of caregiving role2. Health care concerns due to aging in care recipient/care giver3. Fears about the long-term future of the care recipientWhat makes Caregivers of Adults withLearning Disabilities unique?Benefits1. Normative nature of parental caregiving2. Expertise and feelings of mastery from long term caregiving
Distinctive Concerns of AgingFamily Caregivers of Adults with LD1. Extensive duration of caregiving role (Haley & Perkins,2004)- Caregiving for ill spouse or parent with a chronic illness – average 4.5years.- Caregiving for a child with ID can be a prolonged endeavor lasting upto 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 andpessimism (Walden, Pistrang & Joyce, 2000).
2. Health care concerns due to aging in the caregiver andcare recipient (Haley & Perkins, 2004)- Aging with ID presents additional challengessecondary to the pre-existingintellectual/developmental disability.- In particular, persons with Down syndrome,Cerebral Palsy, and Prader-Willi syndrome haveparticular medical issues associated with aging.Distinctive Concerns of Aging FamilyCaregivers of Adults with LD
- A study of aging women caregivers (N = 208, aged 40+)compared with general population data found that caregiversreported higher prevalence of:OsteoarthritisHigh blood pressureObesityActivity limitation (e.g. carrying groceries, climbing stairs,walking several blocks).However, despite poorer health outcomes, the caregivers ofpeople with LD generally rated their health status morefavorably!12(Yamaki, Hsieh, & Heller, 2009).With increasing age, caregivers are also increasingly likely todevelop chronic disease and impairments.
Potentially Beneficial Factors for AgingFamily Caregivers of Adults with LD1. Normative nature of parental caregiving (Haley &Perkins, 2004)Natural and familiar parenting role, rather than spouses and children whofind 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 ofburden overtime.Studies have shown reduced burden in older parents with adult childrenaged 30+ compared to younger parents (Heller, Rowitz & Farber, 1992).
Case Study – Compound CaregiverPerkins, E. A. (2010). The compound caregiver: A case study ofmultiple caregiving roles. Clinical Gerontologist, 33, 248-254.- Adults with LD have increased life expectancies, and are now morelikely to outlive their parents.- Greater chance of becoming a sandwich caregiver (i.e. caregivingfor an older parent) (Rogerson & Kim, 2005).- There is also the possibility that these primary caregivers may alsoundertake additional caregiving duties to other family members(e.g. in-laws, spouse, and siblings).- These multiple caregivers are “compound caregivers” – as theyhave “compounded” caregiving duties!14
15“Kay”, age 60, mother and primary caregiver to son Derek.“Derek”, age 28, has Down syndrome, severe learningdisabilities, lupus, and requires considerable support with allactivities of daily living. He has resided with his family sincebirth.Kay became a caregiver to her mother-in-law, father, sister, andlastly, 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 timesin her life.Case Study – Compound Caregivers
161st Compound Caregiving EpisodeCare recipient: Mother-in-LawCare recipient diagnosis: Terminal Lung CancerDuration: 2 monthsLocation: Hospital“It was heartbreaking to us that we were never able to care for her within ourhome. In some ways, it would have been less arduous a situation, as we alwaysneeded someone there to watch Derek. We were exhausted trying to keep upon the home front as well as keeping hospital duty afloat.”2nd Compound Caregiving EpisodeCare recipient: FatherCare recipient diagnosis: StrokeDuration: 9 monthsLocation: Father’s home“My father was now like my son. Our own support system was diminishingbefore our eyes.”
173rd Compound Caregiving EpisodeCare recipient: SisterCare recipient diagnosis: Terminal Breast CancerDuration: 6 monthsLocation: Sister’s home“Providing for my sister’s needs caused our family to have to digdeep to keep our bearings.”“We had to make adjustments, and be flexible, for when mymother’s caregiving involvement decreased, she helped out morewith Derek, so I could be more available for my sister.”
184th Compound Caregiving EpisodeCare recipient: MotherDiagnosis: Compression fracture of spine/anemia/fractured hipDuration: 9 monthsLocations: Mother’s Home, Kay’s Home, Hospital“I was unprepared for the extraordinary burden this season ofadditional caregiving was presenting.The stress of the final five months of my mother’s life createdrepercussions from which I still struggle.My role as wife, and mother/caregiver to Derek was completelydisplaced by my mother’s needs. When I think back now, I realizethat I was apprehensive about acknowledging that I needed help,let alone asking for it.”
19Most Notable Issues:1) Reduction in Social SupportA person who previously was source of social support to the caregiver,becomes an additional care recipient.2) Difficulty in Prioritizing Caregiving DemandsDifficult choices may have to be made when prioritizing competingcaregiving demands that can cause distress to the compound caregiver.3) Reduction in Stress ResiliencyCumulative effect of depleting one’s coping resources may jeopardizethe 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, websiterecruitment, 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 caregiversundertake additional caregiving roles. Rehabilitation Psychology, 55, 409-417.
Caregiver Study1) How common is compound caregiving?2) Does compound caregiving status impact physical andmental well-being of compound caregivers comparedwith non-compound caregivers?Perkins , E. A. & Haley, W. E. (2010). Compound caregiving: when lifelong caregiversundertake additional caregiving roles. Rehabilitation Psychology, 55, 409-417.21
Compound Caregiving VariablesCompound caregiving status:Determined by response to the questionDo you currently have any other caregiving responsibilitiesto another family member other than your son/daughterwith 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 EpidemiologicalStudies – 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 RangeCaregiver CharacteristicsDemographicAge (years) 60.8 8.5 50 – 92Education (years)* (note 12 years = high school) 15.1 2.4 12 – 22Gender (Female) 91%CaregivingTotal caregiving hours per week 39.4 21.3 7 – 88Compound 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
CompoundCaregiverNon-CompoundCaregiverM SD M SD tLife Satisfaction 17.05 5.81 17.58 7.03 .36Depression 10.94 9.30 12.61 9.65 .85Physical Health 44.51 11.28 43.09 10.07 -.62Mental Health 47.66 11.22 48.67 11.53 .41Desire 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 RecipientAlzheimer’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 foranother relative might galvanize discussions of “Whathappens 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 compoundcaregiving as a coping mechanism.28
• 5 “Triple” caregivers i.e. currently looking after 2 otherscare recipients plus their son/daughter with intellectualdisabilities (e.g. one caregiver was caring for herdaughter, a mother with Alzheimer’s disease, and a fatherwith Parkinson’s disease).• Depression - 18.2 (12.0 for the sample)• Life Satisfaction 12.4 - (17.4 for the sample)29Multiple Compound Caregiving– A More Serious Concern?
30I feel bad that my time is taken up with mymany caregiving duties – it stops me frombeing able to encourage my son to domore.My biggest problem is how do Iintegrate my son into all the demandsof my caregiving roles.I feel anxiety and resentmentsimultaneously dealing with myhusband’s issues – it has affected thequality of my marital relationship.A difficult problem is having theresponsibility of running all themaintenance of the home...it’s all newto me.You need to be adaptable at juggling allaspects of your life.I feel guilty that I am not able tospend quality time with my otherchildren, and guilty that I need theirhelp.A Selection of Quotes from Compound Caregivers
White Paper – Policy Recommendations- Stresses importance of carecoordination that isresponsive to changingcaregiver demands.- The need for coordinatedrespite care.- Using age alone as a basis forcaregiver categories toprioritize support services islikely to overlook difficultiesfaced by compoundcaregivers.31http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf
Use of Online Social Support?• There is a still relative paucity of informationregarding support on the Internet for caregiverswho care for people with IDD• The utility of the internet is evident particularly whenlogistical constraints and lack of in-person supportgroups are considered.• However, caution is also advised as group dynamicscan result in the perpetuation of inaccurate mythsand information.32Perkins, E. A., & LaMartin, K. M. (2012). The internet as social support for older carersof adults with intellectual disabilities. Journal of Policy and Practice in IntellectualDisabilities, 9, 53-62.
How can we support caregivers?• Utilize and embrace the unique knowledge andexpertise the caregiver has.• Promote collaboration and discussion of caregivingissues with all family members (e.g. siblings) toencourage fair distribution of caregiving duties.• Encourage use of available services and options (e.g.home help, companion services).• Encourage building/strengthening of informalnetwork – friends, other parents/caregivers, localcommunity resources, online communities.33
• Encourage caregivers to participate infamily/parent or caregiver support groupsincluding online communities.• Use respite care, and encourage “me” time – aregularly scheduled activity that the caregiver trulyenjoys.• Encourage caregivers to be more aware of theirhealth, and stress and not neglect or overlooktheir own healthcare needs.34How can we support caregivers?
35Don’t Delay.......Start to make those plans.....What if’sWho withWhereFinanceshttp://sonoranucedd.fcm.arizona.edu/sites/sonoranucedd.fcm.arizona.edu/files/CAREGIVING_Roadmap_021010.pdfImperative to encourage caregiversto make future plans
The Future is Now!The Future is Now: A Future Planning Training Curriculum for Families andTheir Adult Relatives with Developmental Disabilities.Factor, A., Debrine, E., Caldwell, J., Arnold, K., Kramer, J., Nelis, T., & Heller, T.(2010). 3rd EditionThis curriculum helps families to plan and prepare a letter of intent that laysout their dreams for the future and identifies the steps required totransform this dream into a reality.36Contains updated and expanded resource lists!http://www.rrtcadd.org/blog/files/c640b98a22c0251fd9d4ea8f1e8f615b-5.html
Easing Your Stress Guide37English version www.fddc.org/news/publications-easing-your-stressSpanish version www.fddc.org/news/publications-aliviando-su-estresFree booklet by theFlorida Developmental Disabilities CouncilAimed specifically at caregivers of peoplewith developmental disabilities.Includes description of stress, andguidelines 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.”
38A Tale of Triumph and New TransitionsArtist: Win Hammer
Education forLifelong Health Series39http://flfcic.fmhi.usf.edu/program-areas/health.html under the materials and resources tab.
Contact Information:Dr. Elizabeth PerkinsAssociate Director/Research Assistant ProfessorFlorida Center for Inclusive Communities/UCEDDUniversity of South Florida, Tampa, Florida, USA.Email:- email@example.comTel: (813) 974 7076www.flcic.orghttp://flfcic.fmhi.usf.edu/projects/health.htmIf 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 DisabilitiesFCIC Representative, Florida Developmental Disabilities CouncilAdvisory Board - Disability and Health Program, Florida Department of Health40
ReferencesBraddock, D., Hemp, R., & Rizzolo, M.C. (2008). The state of the states indevelopmental disabilities: 2008. Washington, DC: American Associationon Intellectual and Developmental Disabilities.Haley, W. E., & Perkins, E. A. (2004). Current status and future directions infamily caregiving and aging people with intellectual disabilities. Journalof Policy and Practice in Intellectual Disabilities, 1, 24-30.Heller, T., Rowitz, L., & Farber, B. (1992). The domestic cycle of families ofpersons with mental retardation (Rep.). Chicago, IL: University of Illinoisat Chicago, Affiliated Program in Developmental Disabilities and School ofPublic Health.Perkins, E. A. (2010). The compound caregiver: A case study of multiplecaregiving roles. Clinical Gerontologist, 33, 248-254.Perkins, E. A. (2011). Compound caregivers: overlooked and overburdened[White paper]. Tampa, Florida: University of South Florida, Florida Centerfor Inclusive Communities.http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf41
References42Perkins, E. A. & Haley, W. E. (2010). Compound caregiving: when lifelongcaregivers undertake additional caregiving roles. RehabilitationPsychology, 55, 409-417.Perkins, E. A., & LaMartin, K. M. (2012). The internet as social support forolder carers of adults with intellectual disabilities. Journal of Policy andPractice in Intellectual Disabilities, 9, 53-62.Perkins, E. A., Lynn, N., & Haley, W. E. (2007). Caregiver issues associated withwandering. In A. L. Nelson & D. L. Algase (Eds.) Evidence based protocolsfor 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 ofthe baby-boom cohort in the United States: Recent trends and implications.Proceedings of the National Academy of Sciences, 102, 15319-24.
References43Saxon, S.V., Etten, M. J., & Perkins, E. A. (2010). Physical Change and Aging: AGuide for the Helping Professions (5th ed). New York: Springer.Todd, S., & Shearn, J. (1996). Time and the person: Impact of support services onthe lives of parents of adults with intellectual disabilities. Journal of AppliedResearch in Intellectual Disabilities, 9, 40-60.Walden, S., Pistrang, N., & Joyce, T. (2000). Parents of adults with intellectualdisabilities:Quality of life and experiences of caring. Journal of AppliedResearch in Intellectual Disabilities, 13, 62-76.Yamaki, K., Hsieh, K., & Heller, T. (2009). Health profile of female caregiverssupporting adults with intellectual disabilities at home. Intellectual andDevelopmental Disabilities, 47(6), pp. 425-435.
44Saxon, S.V., Etten, M. J., & Perkins, E. A. (2010).Physical Change and Aging: A Guide for the HelpingProfessions (5th ed). New York: Springer.This 500 page book provides a comprehensiveoverview of the aging process, describescommon aging-related conditions/diseases andalso includes chapters on caregiving, and agingwith lifelong disabilities.