IDD and Dementia. 5.5 Services Available for Persons with IDD and Dementia


The amount and type of services that people with IDD and dementia need will change over time as the symptoms become more pronounced (Jokinen et al., 2013). For example, as early stages of dementia develop, adults with IDD living on their own will need additional assistance in coping and adapting to the early changes and decline. Eventually, the person will not be capable of living alone and the demands on housemates sharing an apartment may become too burdensome. Sometimes it is prudent for an adult with IDD affected by early-stage dementia to move to a formal community residential setting, such as a group home, a cluster apartment, or similar supported living arrangement that may have staff who are trained and experienced in working with individuals with dementia (Jokinenet al., 2013).

Group homes are an alternative for long-term care services provided to adults with IDD who have developed dementia (Chaput, 2002; Janicki et al., 2002; McCarron et al., 2002, 2005). Older adults in the general population who have dementia can also reside in residential care settings (Fisher Center for Alzheimer's Research Foundation, 2010). Residential settings for individuals with dementia provide housing and supervision for adults with declining faculties and abilities related to dementia who can no longer live independently and who would otherwise end up living in an institutionalized setting. However, there may be some distinctions between the settings designed primarily to serve individuals with IDD who develop dementia compared to other residential settings that do not serve individuals with IDD, including their sources of financial support and the regulatory authority governing their operation (Janicki, 2011). Despite these differences, the various types of residential care facilities that can serve different populations with dementia have equivalent average annual costs because of care demands; the average annual cost of care for adults with dementia was $53,320 in IDD group homes in 2010 (Janicki et al., 2005; Janicki, 2010). During the same period the average annual cost in assisted living communities not dedicated to the IDD population was $57,144 (MetLife, 2010).

For adults with IDD and dementia who live in group homes or other supported living environments, the residential care facilities that focus on individuals with IDD must consider the extent to which they have the policy, staffing, and other resource supports so that residents may remain in place as their functional abilities decline (Janickiet al., 2002, 2005). Staff of group homes that serve individuals with IDD, rather than individuals with dementia, generally focus on young and middle-aged adults, and issues around employment, community participation and independence promotion. When dementia becomes present among some of the residents, the previous staffing approaches and philosophies may not be as appropriate (McCallion & McCarron, 2004). The approaches to care that staff use must reconcile progressive loss of ability and end-of-life care within a system dedicated to skill development and independent living (Janicki et al., 2000). There must also be openness to collaborating with dementia-specific and palliative care resources (McCallion et al., 2012).

With respect to day programs, agencies that focus on individuals with IDD are currently organized for large group activities. When dementia becomes more prominent among some individuals with IDD, adult day programs can be reorganized to better support small group activities and flexibility in hours of involvement for the individual with dementia (e.g., partial versus full days). The activities and services provided in an adult day center can also be offered by staff trained in dementia care practices, including supporting existing skills and memories and rather than teaching new skills (Jokinen et al., 2013).

As mentioned previously, the Home and Community-Based Settings Rule (see Appendix A) promotes the development of services and supports that are person-centered, responsive to specific, assessed needs, and retains a person's right to reside in the setting of their choice. Services and supports should be altered only in response to developing needs, and only by adhering to the requirements for modifying an individual's person-centered service plan. Adhering to the parameters of the rule will ensure that individuals' supports adjust to their cognitive, health and safety needs.

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