Of the 5.4 million Americans with Alzheimer’s Disease or other forms of dementia, 70 percent are cared for in the community by family and friends. This raises an important question of how well their caregivers are able to address the medical needs of these individuals. Prior research has demonstrated that for individuals with dementia, unmet needs in activities of daily life were predictive of both nursing home admission and death. Moreover, since caregiver stress also predicts nursing home admissions for individuals with dementia and negative health outcomes for the caregivers themselves, assessing how well caregivers’ needs are met is also an important concern.
In light of this, a recent study of residents of Baltimore, Maryland, aimed to assess how well the needs of community-dwelling individuals with dementia and their caregivers were met. These individuals with dementia had an average age of 84, and an average of 13 years of education. Seventy-three percent of these individuals had an annual income over $25,000, and 68 percent were Caucasian. The authors examined the question of how well needs were met by utilizing a comprehensive, multidimensional needs assessment tool that evaluated the health and well-being of both individuals with dementia and their caregivers. The individuals with dementia in this study were evaluated using the Johns Hopkins Dementia Care Needs Assessment (JHDCNA), which covers 15 care recipient domains. These domains include safety, availability of caregiver, meaningful activities, assistance with legal or insurance issues, assistance with activities of daily life, and assistance with a variety of medical conditions. In addition to general measures of physical health, caregivers were evaluated for their caregiving load, quality of life, education, and symptoms of depression.
Looking at the individuals with dementia, 99 percent had at least one unmet need in the 15 domains measured by the JHDCNA. Forty-two percent had at least eight unmet needs, and the overall average number of unmet needs was 7.7. Ninety percent of these individuals had an unmet need related to safety, such as fall risk management (70 percent) or wander risk management (33 percent). The other main domains of unmet needs were general health care (63 percent), meaningful activities (53 percent), and legal issues such as advance directive planning (48 percent). Additionally, 32 percent of these individuals with dementia had no prior dementia assessment. Individuals with more unmet needs were likely to be nonwhite, less educated, and to live alone. Additionally, individuals with mild dementia had signiﬁcantly higher total unmet needs than those with severe dementia.
As for caregivers, 97 percent had at least one unmet need on the JHDCNA items pertaining to caregivers. Thirty-three percent had more than five unmet needs. On average, 24 percent of the JHDCNA items pertaining to caregiver needs were unmet. The most commonly unmet needs were for resource referrals (88 percent), dementia education (85 percent), mental health care (45 percent), and general health care (22 percent). Those caregivers with a higher likelihood of unmet needs were nonwhite, less educated, had more depressive symptoms, had fair or poor self-reported health, and had lower quality of life scores. Interestingly, caregiver burden did not significantly affect the likelihood of having unmet needs.
Although this study was not looking at a representative population, it does provide evidence that greater attention must be paid to the needs of community-dwelling individuals with dementia and their caregivers. While the levels of unmet needs may differ from community to community and may not be as high as reported here, their prevalence here, along with previous evidence about the medical consequences of unmet needs, suggests that this is a significant public health issue that must be addressed.
Black BS, Johnston D, Rabins PV, et al. Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study. Journal of the American Geriatrics Society (2013); Vol. 61(12); 2087-2095.