As has occurred within the general population, life expectancy for people with mental retardation has increased considerably during the past decades, so that many of them now reach old age. The aging process presents people with retardation and their families with an immense challenge. The aging and death of their parents lead to changes in the family support network, which affects the help that they and their family members require. The service system too has to face the major challenge of helping family members cope with this complex issue, whether the aging person lives at home or in an out-of-home setting. Several questions arise in this context, such as: How does the aging process affect the functional, health, and social needs of this population? What can be done to allow these individuals to remain where they are for as long as possible as they grow older? How do changes in the age composition of residents in out-of-home settings affect the types and extent of services required?
The comprehensive nationwide study presented in this report compiled information on adults with mental retardation (age 40+) in order to assist the Ministry of Social Affairs and service providers to develop suitable solutions for them. The study examined personal, social, and health characteristics of adults with mental retardation living in out-of-home settings, or living with their families and employed at sheltered employment frameworks, and reviewed their needs and the solutions provided by the services. The report presents findings on the health and functional of various age groups, their needs in the areas of employment and leisure, and the needs of their families. It includes a discussion of the implications of the findings for the development of services. For example:
Expanding the workforce in the services for people with retardation to respond to the increased number of older adults with mental retardation and providing suitable guidance to members of all related professions.
In out-of-home settings, the connection with family members was found to weaken and their involvement to decline, mainly because the parents themselves were aging. It is important for the social service team to invest efforts to prevent this distancing, either by means of “family days” or by providing transportation for the residents and/or members of their families. The physical environment in out-of-home settings should also be adapted to enhance accessibility and prevent risk situations.
In the case of those living with their families, many caregivers – particularly parents – reported feeling burdened. Many also said that they were worried about future care, but, nonetheless, had not contacted any agency in this regard. It is therefore important to strengthen the social system of providing information, counseling, and support to family members. In particular, family members need help in planning for the future.
As the parents grow older, the siblings assume the main caregiving role. It is feared that this could be detrimental to their employment, as they may have to reduce the number of weekly hours worked or take days off. Therefore, in all types of settings, it is necessary to invest in support of the siblings.
Given that various health conditions were found to be under-diagnosed, consideration should be given to developing tools adapted to meet the unique needs of aging people with mental retardation. These tools would make it possible to identify and diagnose age-related diseases and to raise the professionals’ awareness of the specific needs of this population. Training should also be given to a cadre of professionals specializing in aging with retardation, particularly specialists in geriatric medicine and psycho-geriatrics.
The study was conducted in cooperation with the Ministry of Social Affairs and Social Services, the Shalem Foundation, and JDC-ESHEL. The findings are being disseminated throughout the Israeli social and health services and the implications for service development are being discussed in various forums.
Citations in the professional and academic literature
Carmeli, E., & Merrick, J. (2010). Aging people with intellectual disability in Israel. International Journal on Disability and Human Development, 9(4), 263-268.
Finkelstein, A., Tenenbaum, A., & Bachner, Y. G. (2019). ‘I will never be old’: adults with Down syndrome and their parents talk about ageing-related challenges. Ageing & Society, 1-20.
Finkelstein, A., Bachner, Y. G., Greenberger, C., Brooks, R., & Tenenbaum, A. (2018). Correlates of burnout among professionals working with people with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 62(10), 864-874.