Looking Forward: Research to Respond to a Rapidly Aging Population

Abstract

People aging with severe disabilities face many age- and disability-related challenges that are shared with a range of family members and other caregivers. Although these challenges are often exacerbated by substantial physical, cognitive, communication, health, and other impairments associated with severe disabilities, thematically, they are often similar to the challenges faced by other older persons as they navigate the aging process. These themes include (a) planning for a desired post–working years lifestyle, (b) identifying and securing services and supports that accommodate disability, (c) sustaining the support of family and friends, (d) maintaining optimal health, (e) dealing with grief and end-of-life issues, and (f) avoiding loneliness and isolation. Using these themes, this final article reviews the findings of the articles in this special issue as well as other related studies to suggest potentially fruitful directions in future research to contribute to the well-being of the rapidly growing population of persons aging with severe disabilities.

Keywords

aging disability research practice

Get full access to this article

View all access options for this article.

References

Amado

A. N.

DeGrande

Boice

Hutcheson

(2011). Impact of two national congregational programs on the social inclusion of individuals with intellectual/developmental disabilities. Minneapolis: Institute on Community Integration, University of Minnesota. Retrieved from https://rtc.umn.edu/docs/CommunityOrganizationsPaper5.pdf

Anderson

G. O.

(2010). Loneliness among older adults: A national survey of adults 45+. Washington, DC: AARP Research. doi:10.26419/res.00064.001

Anderson

Larson

Lakin

Kwak

(2003). Health insurance coverage and health care experiences of persons with disabilities in the NHID-D (DD Data Brief, Vol. 5, No. 1). Retrieved from https://ici.umn.edu/products/view/113

Bittles

A. H.

Petterson

B. A.

Sullivan

S. G.

Hussain

Glasson

E. J.

Montgomery

P. D.

(2002). The influence of intellectual disability on life expectancy. Journal of Gerontology, Series A: Biological Sciences & Medical Services, 57, 470-472.

Bloomer

Botti

Runacres

Poon

Barnfield

Hutchinson

(2018). Communicating end-of-life care goals and decision-making among a multidisciplinary geriatric inpatient rehabilitation team: A qualitative descriptive study. Palliative Medicine, 32, 1615-1623. doi:10.1177/0269216318790353

Bogenschutz

Amado

(2015). Social inclusion for people with IDD: What we know and where we go from here. In American Association on Intellectual and Developmental Disabilities (Ed.), Critical issues in intellectual and developmental disabilities: Contemporary research practice and policy (pp. 19-36). Washington, DC: American Association on Intellectual and Developmental Disabilities.

Bogenschutz

Hewitt

Hall-Lande

LaLiberte

(2010). Status and trends in the direct the support workforce in self-directed supports. Intellectual and Developmental Disabilities, 48, 345-360. doi:10.1352/1934-9556-48.5.345

Burke

M. M.

Fujiura

(2013). Advantages and disadvantages of using the Survey of Income and Program Participation (SIPP) to examine caregiver health. International Review of Research in Developmental Disabilities, 45, 260-276. doi:10.1016/B978-0-12-407760-7.00007.4

Burke

M. M.

Lulinski

Jones

Gallus

(2018). A review of supports and services for adults with intellectual and developmental disabilities (IDD) and their families in the United States: Past and present context impacting future research, practice and policy. International Review of Research in Developmental Disabilities, 54, 137-176. doi:10.1016/bs.irrddd.2018.07.005

10.

Burke

M. M.

Waitz-Kudla

Rabideau

Taylor

J. L.

Hodapp

R. M.

(2019). Pulling back the curtain: Issues in conducting intervention studies with transition-aged youth with ASD and their families. Autism, 23, 514-523. doi:10.1177/1362361317753016

11.

Cacioppo

J. T.

Cacioppo

(2018). The growing problem of loneliness. Lancet, 391, 426. doi:10.1016/S0140-6736(18)30142-9

12.

Campbell

(2019, January 24). New research: 7.8 million direct care jobs will need to be filled by 2026 [Online news post]. Retrieved from https://phinational.org/news/new-research-7-8-million-direct-care-jobs-will-need-to-be-filled-by-2026

13.

Carter

(2007). Including people with disabilities in faith communities. Baltimore, MD: Paul H. Brookes.

14.

Centers for Disease Control and Prevention. (2016). Home and recreational safety: Costs of falls among older adults. Retrieved from https://www.cdc.gov/homeandrecreationalsafety/falls/fallcost.html

15.

Clute

M. A.

Kobayashi

(2012). Looking within and reaching out: Bereavement counselor perceptions of grieving in adults with ID. American Journal of Hospice & Palliative Care, 29, 583-590. doi:10.1177/1049909112439617

16.

Colby

S. L.

Ortman

J. M.

(2014). The baby boom cohort in the United States: 2012 to 2060. Current population reports (Report No. P25-1141). Washington, DC: U.S. Census Bureau.

17.

Dodd

Dowling

Hollins

(2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 49, 537-543. doi:10.1111/j.1365-2788.2005.00702.x

18.

Finlayson

Jackson

Cooper

Morrison

Melville

Smiley

. . . Mantry

(2009). Understanding predictors of low physical activity in adults with intellectual disabilities. Journal of Applied Research on Intellectual Disability, 22, 236-247. doi:10.1111/j.1468-3148.2008.00433

19.

Forrester-Jones

(2013). The road barely taken: Funerals, and people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26, 243-256. doi:10.1111/jar.12022

20.

Friedman

(2019). Quality-of-life outcomes of older adults with severe disabilities. Research and Practice for Persons with Severe Disabilities, 44, 237-250. doi: 10.1177/1540796919879227

21.

Friedman

Rizzolo

(2018). Friendship, quality of life and people with intellectual and developmental disabilities. Journal of Developmental and Physical Disabilities, 30, 39-54. doi:10.1007/s10882-0179576-7

22.

Gilmore

Cuskelly

(2014). Vulnerability to loneliness in people with intellectual disability: An explanatory model. Journal of Policy and Intellectual Disabilities, 11, 192-199. doi:10.1111/jppi.12089

23.

Hahn

J. E.

Fox

Janicki

M. P.

(2015). Aging among older adults with intellectual and developmental disabilities: Setting national goals to address transitions in health, retirement, and late-life. Inclusion, 3, 250-259. doi:10.1352/2326-6988-3.4.250

24.

Hastings

R. P.

Thomas

Delwiche

(2002). Grandparent support for families of children with Down syndrome. Journal of Applied Research in Intellectual Disabilities, 15, 97-104. doi:10.1046/j.1360-2322.2001.00097.x

25.

Hawkley

Thisted

Masi

Cacioppo

(2010). Loneliness predicts increased blood pressure, 5-year cross-lagged analyses in middle-aged and older adults. Psychology and Aging, 25, 132-141. doi:10.1037/a0017805

26.

Heller

Gibbons

Fisher

(2015). Caregiving and family support interventions: Crossing networks of aging and developmental disabilities. Intellectual and Developmental Disabilities, 53, 329-345. doi:10.1352/1934-9556-53.5.329

27.

Hsieh

Heller

Bershadsky

Taub

(2015). Impact of adulthood stage and social-environmental context on body mass index and physical activity of individuals with intellectual disability. Intellectual and Developmental Disability, 53, 100-113. doi:10.1352/1934-9556-53.2.100

28.

Hsieh

Hilgenkamp

Murthy

Heller

Rimmer

(2017). Low levels of physical activity and sedentary behavior in adults with intellectual disabilities. International Journal of Environmental Research in Public Health, 14, 1503. doi:10.3390/ijerph14121503

29.

Hsieh

Rimmer

Heller

(2012). Prevalence of falls and risk factors in adults with intellectual disability. American Journal on Intellectual Developmental Disability, 117, 442-454. doi:10.1352/1944-7558-117.6.442

30.

Humphries

Traci

Seekins

(2009). Nutrition and adults with intellectual and developmental disabilities: Systematic literature review results. Intellectual and Developmental Disabilities, 47, 163-185. doi:10.1352/1934-9556-47.3.163

31.

Kirkendall

Linton

Farris

(2017). Intellectual disabilities and decision making at end of life: A literature review. Journal of Applied Research in Intellectual Disabilities, 30, 982-994. doi:10.1111/jar.12270

32.

Krahn

G. L.

Hammond

Turner

(2006). A cascade of disparities: Health and health care access for persons with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Review, 12, 70-82. doi:10.1002/mrdd.20098

33.

Larson

Eschenbacher

Anderson

Taylor

Pettingell

Hewitt

. . . Bourne

M. L.

(2018). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2016. Retrieved from https://risp.umn.edu/archive

34.

Lee

C. E.

Burke

Meghan, M.

Arnold

C. K.

(2019). Examining the relation between disability severity among older adults with disabilities and sibling caregiving. Research and Practice for Persons with Severe Disabilities, 44, 224-236. doi: 10.1177/1540796919879102

35.

Lee

Burke

M. M.

(2018). Caregiving roles of siblings of adults with intellectual and developmental disabilities: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 15, 237-246. doi:10.1111/jppi.12246

36.

Leigh-Hunt

Bagguley

Bash

(2017). An overview of systematic reviews on the public health consequences of social isolation and loneliness. Public Health, 152, 151-172. doi:10.1016/j.puhe.2017.07.035

37.

Mann

Zhou

McDermott

Poston

(2006). Healthy behavior change of adults with mental retardation: Attendance in a health promotion program. American Journal on Mental Retardation, 111, 62-73.

38.

McCann

J. J.

Hebert

L. E.

Bienias

J. L.

Morris

M. C.

Evans

D. A.

(2004). Predictors of beginning and ending caregiving during a 3-year period in a biracial community population of older adults. American Journal of Public Health, 94, 1800-1806.

39.

Melville

Boyle

Miller

Macmillan

Penpraze

Pert

. . . Handkey

(2011). An open study of the effectiveness of a multi-component weight-loss intervention for adults with intellectual disabilities and obesity. British Journal of Nutrition, 105, 1555-1562. doi:10.1017/S007114510005362

40.

Namkung

Greenberg

Mailick

Floyd

(2018). Lifelong parenting of adults with developmental disabilities: Growth trends over 20 years in midlife and later life. American Journal on Intellectual and Developmental Disabilities, 123, 228-240. doi:10.1352/1944-7558-123.3.228

41.

National Core Indicators. (2017). 2016-2017 chart data. Retrieved from https://www.nationalcoreindicators.org/charts

42.

National Council on Disability. (2019). At NCD’s recommendation, all U.S. dental schools will train students to manage treatment of people with intellectual, developmental disabilities. Washington, DC: National Council on Disability PRNewswire. Retrieved from https://www.prnewswire.com/news/national-council-on-disability

43.

Navaie-Waliser

Feldman

P. H.

Gould

D. A.

Levine

Kuerbis

A. N.

Donelan

(2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92, 409-413.

44.

Neece

C. L.

Green

S. A.

Baker

B. L.

(2012). Parenting stress and child behavior problems: A transactional relationship across time. American Journal on Intellectual and Developmental Disabilities, 117, 48-66. doi:10.1352/1944-7558-117.1.48

45.

Perissinotto

Cenzer

Covinsky

(2012). Loneliness in older persons: A predictor of functional decline and death. Archives of Internal Medicine, 172, 1078-1083. doi:10.1001/archinternmed.2012.1993

46.

Perkins

E. A.

(2010). The compound caregiver: A case study of multiple caregiving roles. Clinical Gerontologist, 33, 248-254. doi:10.1080/07317111003773619

47.

Perkins

E. A.

Moran

W. E.

(2010). Compound caregiving: When lifelong caregivers undertake additional caregiving roles. Rehabilitation Psychology, 55, 409-417. doi:10.1037/a0021521

48.

Putnam

Molton

I. R.

Truitt

A. R.

Smith

A. E.

Jensen

M. P.

(2016). Measures of aging with disability in US secondary data sets: Results of a scoping review. Disability and Health Journal, 9, 5-10. doi:10.1016/j.dhjo.2015.07.002

49.

Reynolds

M. C.

Palmer

S. B.

Barton

(2019). Supporting active aging for persons with severe disabilities and their families across the life course. Research and Practice for Persons with Severe Disabilities, 44, 211-223. doi: 10.1177/1540796919880561

50.

Rimmer

J. H.

Chen

M. D.

Hsieh

(2011). A conceptual model for identifying, preventing, and managing secondary conditions in people with disabilities. Physical Therapy, 91, 1728-1739. doi:10.2522/ptj.20100410

51.

Samuel

Rilotta

Brown

(2012). The development of family quality of life concepts and measures. Journal of Intellectual Disability Research, 56, 1-16. doi:10.1111/j.1365-2788.2011.01486

52.

Schore

Foster

Phillips

(2007). Consumer enrollment and experiences in the cash and counseling program. Health Services Research, 42, 444-466. doi:10.1111/j.1475-6773-2006-00679.x

53.

Seltzer

M. M.

Greenberg

J. S.

Floyd

F. J.

Pettee

Hong

(2001). Life course impacts on parenting a child with a disability. American Journal on Mental Retardation, 106, 265-286. doi:10.1352/8095-8017(2001)106<0265:LCIOPA>2.0.CO;2

54.

Stancliffe

R. J.

Nye-Lengerman

K. M.

Kramme

J. E. D.

(2019). Aging, community-based employment, mobility impairment, and retirement: National core indicators–Adult Consumer Survey Data. Research and Practice for Persons with Severe Disabilities, 44, 251-266. doi: 10.1177/1540796919882921

55.

Stancliffe

Anderson

(2017). Factors associated with meeting physical activity guidelines by adults with intellectual and developmental disabilities. Research in Developmental Disabilities, 62, 1-14. doi:10.1016/j.ridd.2017.01.009

56.

Stancliffe

Lakin

K. C.

Doljanac

Byun

S. Y.

Taub

Chiri

(2007). Loneliness and living arrangements. Intellectual and Developmental Disabilities, 45, 380-390. doi:10.1352/1934-9556

57.

Stancliffe

Lakin

K. C.

Taub

Chiri

Byun

(2009). Satisfaction and sense of well-being among Medicaid ICF/MR and HCBS recipients in six states. Intellectual and Developmental Disabilities, 47, 63-83. doi:10.1352/1934-9556-47.2.63

58.

Stancliffe

Wilson

Gambin

Bigby

Balandin

(2013). Transition to retirement: A guide to inclusive practice. Sydney, Australia: Sydney University Press.

59.

Turnbull

H. R.

Poston

Beegle

Blue-Banning

(2004). Enhancing quality of life of families of children and youth with developmental disabilities in the United States. In Turnbull

Turnbull

H. R.

(Eds.), Families and people with mental retardation and quality of life: International perspective (pp. 51-100). Washington, DC: American Association on Mental Retardation.

60.

U.S. Census Bureau. (2018). Older people projected to outnumber children for first time in U.S. history (Release No. CB18-41). Retrieved from https://www.census.gov/newsroom/press-releases/2018/cb18-41-population-projections.html

61.

U.S. Public Health Service. (2002). Closing the gap: National blueprint for improving the health of individuals with mental retardation: Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation. Washington, DC: Author.

62.

Victor

Yang

(2012). The prevalence of loneliness among adults: A case study of the United Kingdom. The Journal of Psychology, 146, 84-104. doi:10.1080/00223980.0211.631875

63.

Waldman

H. B.

Fenton

S. J.

Perlman

S. P.

Cinotti

D. A.

(2005). Preparing dental graduates to provide care to individuals with special needs. Journal of Dental Education, 69, 249-254.

64.

Watson

Voss

Bloomer

M. J.

(2019). Placing the preferences of people with profound intellectual and multiple disabilities at the Center of End-of-Life Decision Making Through Storytelling. Research and Practice for Persons with Severe Disabilities, 44, 267-279. doi: 10.1177/1540796919879701