Living Alone With Dementia: A Reality Check

More than one quarter of adults aged ≥65 live alone in the United States (US) and Europe, and the proportion increases with age. Fueling this phenomenon are a preference for the independence and privacy that living alone affords, as well as longstanding sociodemographic trends, including the geographical fragmentation of families and rising rates of childlessness and divorce. Since the prevalence of dementia doubles every 5 years after age 65, living alone with dementia is also common. Estimates indicate that, depending on the country, between 18% and 51% of older adults with dementia live alone.

 

Our clinical and research experience suggests that individuals living alone with dementia are a heterogeneous group. Some have good support from nearby family or have planned successfully to have paid support. Others live in precarity stemming from the chronic insecurity of facing mounting challenges while relying on limited physical, financial, social, and professional resources. These most vulnerable older adults are often first recognized in hospitals after an acute medical event, such as an injurious fall, and then endure prolonged admissions while the healthcare team identifies alternative living arrangements and pursues appointment of a court-appointed guardian. Others come to attention through referrals to Adult Protective Services or after repeated interventions by paramedics and other emergency medical personnel.

 

The article in this issue by Clare et al shines a valuable light on this population through analysis of a unique longitudinal cohort of older adults diagnosed with mild to moderate dementia in the United Kingdom (UK). The study points to both the relative strengths of those living alone and the special challenges they face. On the one hand, compared to persons living with others, Clare et al found that older adults living alone with dementia had better physical and cognitive function. On the other, they had more comorbid conditions and rated their health less positively. They also consistently reported worse and declining quality of life, higher levels of depression and loneliness, smaller social networks, and lower levels of participation in cultural activities, which points to likely social isolation.

A notable feature of the cohort examined by Clare et al is that individuals living alone with dementia tended to have more limited caregiving support. Fewer than half of the 281 study participants living alone at baseline had a nonresident caregiver willing or able to take part in the study alongside them whereas 91% of the 1,244 study participants living with others had a caregiver participating. In an earlier study of the same cohort,¹ the authors found that 18% of older adults living alone with dementia reported receiving either no help or less than one hour of help per week. Similar findings have emerged in other cohorts. In Germany, Eichler et al.² found that 9% of older adults living alone with dementia had no one to support them with everyday activities and to provide informal care. In a study of African-American older adults with dementia in the US, only 55% of 179 participants living alone reported having a primary caregiver.³

 

Taken together, these findings underscore the limits of the default expectation that older adults with dementia will have informal caregivers, almost always family members, to support them. This expectation is implicit in research studies based on dyads of caregivers and persons with dementia, as well as clinical trials that require study partners for enrollment. Government agencies and nonprofit organizations commonly offer programs that reflect, in their design, the assumption that family caregivers will be available. For example, in the US, the Centers for Medicaid and Medicare Services (CMS) recently launched the “Guiding an Improved Dementia Experience” (GUIDE) model to enhance support for people with dementia. Participating organizations are required to offer multiple services to unpaid caregivers (education, training, support groups, needs assessments), and up to $2,500 per year for respite care. Equivalent supports and services are much less well defined for those without caregivers, and CMS does not plan to study the impact of the GUIDE model in older adults living alone with dementia.

 

Another example of limited institutional attention to the specific needs of people living alone with dementia comes from policies allocating public funding for home care aides, who are often an essential resource for this population. In informal conversations with us, two of the study authors reported that only older adults with savings below about 24,000 British pounds (about 30,000 US dollars) qualify for publicly funded home care aides in England and Wales. No restriction is applied in Scotland or Northern Ireland. The authors also noted the absence of specific provisions or recommendations for UK adults diagnosed with dementia who live alone. In the US, our group estimated that the vast majority (79%) of the 4.3 million older adults living alone with cognitive impairment (ranging from mild cognitive impairment to dementia) do not qualify for Medicaid and are thus unlikely to be eligible for such assistance.

 

The scientific community and policy makers need to reframe the prevailing paradigm to reflect the reality that substantial numbers of older adults with dementia live alone with limited supports from unpaid caregivers. In addition to those without a caregiver, there are persons whose caregivers are geographically distant: living in different towns, states, countries, or even continents, especially in immigrant communities. Caregivers may also be emotionally distant while holding different priorities, values, and beliefs. More broadly, we call for reflection on the specific responsibilities of nations, and their governing bodies, towards their citizens who live alone with dementia. How can they identify their older citizens with dementia who live alone and require specialized supports? What type of incentives would fairly compensate the extra efforts of professionals to assist the most precarious older adults living alone with dementia? How can governments expand eligibility for publicly-funded home care aides? Addressing these questions is essential to ensuring that older adults with dementia who are living alone stop falling through the cracks of healthcare systems not yet equipped to address their needs.