Family Caregiving for Adults Ageing with Intellectual and Developmental Disabilities

Tamar Heller, Sumithra Murthy, and Catherine Keiling Arnold


Families play an important role in providing physical, emotional, and material support to people with intellectual and developmental disabilities (IDD) across the lifespan (Braddock, Hemp, Tanis, Wu, & Haffer, 2017; Heller & Schindler, 2009). This includes providing informal help that supplements any formal support received by the person. Currently, family caregiver responsibilities are lasting longer than in prior decades because of factors such as increased average life expectancy for people with IDD (as well as for caregivers themselves) and in the United States (U.S.), the limited availability of formal services for persons with IDD (Heller & Schindler, 2009).

The number of caregivers for persons ageing with IDD is growing as the older adult population with IDD increases. In the U.S., the number of adults 60 and older with IDD is expected to reach an estimated 1.4 million adults by 2030 (Factor, Heller, &Janicki, 2012). Braddock et al. (2017) estimated that in 2015, approximately 3.6 million of the 5.1 million people with IDD in the U.S. were receiving residential care and supports from family caregivers; Only 13% of adults with IDD were living in supervised residential settings. They estimated that 71% of individuals with IDD live with a family caregiver, with 35% of those caregivers being between the ages of 41 and 59 and 24% being aged 60 or older (Braddock et al., 2017). It is not uncommon for adults with IDD to live with ageing parents until their parents are no longer able to care for them or pass away. The importance of unpaid caregivers in providing support to persons with IDD in the U.S. is significant as nearly 75% of individuals with IDD do not receive any substantive formal or paid supports (Hewitt, 2014). For those who qualify for services, there may be long waiting lists for community-level state supports resulting in people with IDD being more likely to rely mainly on their families tor support tor long periods of time (Larson et al., 2017).

Issues for Family Caregivers

The impact of long-term family caregiving on the financial, health, and social well-being of caregivers is a public health concern (Taggart, Truesdale-Kennedy, Ryan, & McConkey, 2012). Some families can experience poorer health, psychosocial, and economic outcomes because of their life-long caregiving activities and unmet needs for supports to assist them in their caregiving roles (Heller, Caldwell, & Factor, 2007). Often there is a change in relationship dynamics as families grow older together that can create new issues or exacerbate issues tor family caregivers (Grossman & Webb, 2016). It is easiest to understand this by considering families of persons with IDD from an Ecological Framework perspective, which views the needs of caregivers and care recipients as interlinked so supports and services related to health, economics, and psychosocial concerns can be viewed as affecting both care recipients and caregivers (Eckenwiler, 2007; Shogren, 2013). Within this framework, the concept of Family Quality ot Life (FQOL) is relevant. FQOL measures the well-being of the family and considers how individual and family-level needs interact (Zuna, Summers, Turnbull, Hu, & Xu, 2010). FQOL recognises positive adaptation and family strengths (Chiu et ah, 2013). It supports the development ot strategies to provide services and supports to families, not just individuals, that improve health, psychosocial, and economic outcomes.

Financial Outcomes

FQOL is impacted by many factors as family caregivers provide support to persons with IDD over a lifetime. Principal among those are employment and financial issues. Family caregiving can have significant economic impacts on caregivers and the family unit as a whole. Although it is common for caregivers in general to be employed (National Alliance tor Caregiving, 2009), they often make employment changes in response to their caregiving responsibilities including reducing work hours, changing jobs, stopping work entirely, and taking a leave of absence (National Alliance for Caregiving, 2009). Caregivers ot individuals with IDD in particular, are less likely to be employed than noncaregivers and even if employed, often miss more days of work (Bronheim, Goode, & Jones, 2006). Studies also report lower savings and lower income in families ot people with IDD (Heller et ah, 2007; Parish, Seltzer, Greenberg, & Floyd, 2004) as well as greater family related work role strain (Heller & Schindler, 2009). Obstacles to career advancements leading to economic losses have been found to increase in midlife for parents of children with IDD (Parish, Rose, & Swaine, 2010). Lost or missed opportunities in employment due to the constraints of family caregiving contributions to retirement plans and Social Security, thereby affecting long-term financial well-being as well (MetLife, 2011). These kinds of long-term economic losses are typically compounded for members of racial and ethnic minority groups (AARP, 2013). In sum, family caregivers often experience employment challenges over their work lives related to workplace flexibility and earnings that can result in less money available to them in retirement and later life.

Health and Social Outcomes

A study by Totsika, Hastings, and Vagenas (2017) showed that after controlling for demographics, caregivers ot people with ID reported a similar quality of life to all other caregivers but worse physical health status. Health and well-being of families of adults with disabilities, especially adults with IDD, can be influenced by factors such as the characteristics of the family member with IDD, the family’s socio-economic status, the extent ot a family’s social support network and the minority cultural context the family lives within (Heller et ah, 2007; Heller & Schindler, 2009). Common mental health concerns for caregivers of persons with IDD include stress, depression, and isolation (Feinberg, Reinhard, Houser, & Choula, 2011; Pinquart & Sorensen, 2003) as well as physical health concerns such as heart disease, hypertension, stroke, poor immune function, and impaired sleep (Pinquart & Sorensen, 2007; Piazza, Floyd, Mailick, & Greenberg, 2014; Seltzer, Floyd, Song, Greenberg, & Hong, 2011). Compared to non-caregivers, caregivers of persons with IDD in general are more likely to report health problems (Ho, Collins, Davis, & Doty, 2005), a higher number ot chronic conditions (Bronheim et ah, 2006; Heller et ah, 2007; Heller & Schindler, 2009; Lunsky, Tint, Robinson, Gordeyko, & Kuntz, 2014; Seltzer et ah, 2011) and are less likely to see a general practitioner, see or afford a mental health professional, or afford prescription medicines (Heller & Schindler, 2009). Racial and ethnic minority caregivers ot persons with IDD are at a higher risk for negative health outcomes (Magana, Greenberg, & Seltzer, 2004; Magana & Smith, 2006, 2008). In general, caregivers’ elevated stress predicts nursing home placement of individuals with disabilities (Spillman & Long, 2007). For persons ageing with IDD, caregiver health is an important FQOL issue that can have consequences for their self-determination and independent living now and in the future.

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