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In Webber et al.'s (1994) and our two studies, elderly persons with dementia living alone in the community were mostly women. In Webber et al.'s study and Study 2, those who were living alone were older. These findings would be expected as women typically live longer than men, and their spouses tend to be older than themselves and predecease them.
Home-delivered meals were used more frequently by those living alone than those living with others in all three studies. Homemaker service was more frequently used by those living alone than those living with others in both Study 1 and Webber et al.'s study, but did not differ between groups in Study 2. In fact, in Study 2, those living with spouses were using this service more frequently than those living alone. This may relate to the use of this service as relief for the caregiver and thus was more frequently made available as a service to the spouse (rather than to assist the person with dementia).
One of the purposes of Study 2 was to explore more fully informal services that were used by those living alone, in terms of family and neighbor involvement in providing care. Results showed that elderly people with dementia living alone had less local family than those living with a spouse, which could be one of the reasons why they live alone. Those living alone who had local family might have been identified at younger ages and encouraged to live with families or move into group living situations. Therefore, it is possible that our sample of persons living alone continued to do so because of the lack of local family support, not because they are less impaired.
Also, more practical help was provided by non-live in, non-spousal relatives and neighbors for those living alone. This finding corroborates Webber et al.'s results, where the involvement of neighbors and friends as caregivers was greater for those living alone. Perhaps this informal support is at least as effective as less flexible agency support, in caring for this particular population. On the other hand, spouses have less informal support in taking care of a demented spouse. This may suggest that these spouses are socially isolated in their role from relatives and friends, and that formal services do not compensate for this. In our experience, this sense of isolation is frequently identified by spousal caregivers as a source of burden/stress and may account, to some extent, for the fact that their partners do not remain longer in the community than those living alone.
Study 2 also showed that people living alone did not die more often in the community than those living with spouses, as might have been expected for the group. However, since the Study 2 sample was already known to and using formal services, this might not be representative of what is happening generally in the community. We do not know about those who are not using any services. Often people living alone tend to express strong desires to remain at home, in spite of risks, and dying at home would be a natural consequence for many.
The results for assessment of risk show that people living alone are at much greater risk than those living with a spouse. However, the risks dealt with here are risks 'perceived' by clinicians. Clinicians who assess risk potentials may assume that those living with spouses are at lower risk because of the presence of the spouse, and those living alone at greater risk because they live alone. If those living alone were really at greater risk, they might be expected to die or be placed in facilities sooner than those living with spouses. At least in this study, there were no significant differences between the two groups in the length of the stay in the community or outcome, in terms of institutionalization or death.
Our finding that none of our selected variables contributed significantly to use of service when examined together suggest: (1) the difference observed between groups on the use of home-delivered meals must be viewed with caution; and (2) other domains need to be considered when determining who uses services, at least for clients of CPTs.
At this point the differences between the samples for Webber et al. (1994), Study 1 and Study 2 must be noted. Webber et al.'s cases were attending an Alzheimer's Disease Diagnostic and Treatment Center in California. The participants in Study 1 were drawn from a nationwide epidemiologic study of dementia in Canada. The participants in Study 2 were all persons with dementia referred to a community-based mental health team. Thus, in these three different samples some consistencies have merged. The observed differences in the findings may be, at least in part, a function of these sampling differences.
Certainly the issues involved in providing formal care (i.e. use of services) to persons with dementia living alone in the community are complex and additional investigations are warranted. The identification of persons at high risk of harm would appear to be of crucial importance. Our failure to find an association between perceived risk and service use may be a function of the way risk was measured. Our finding that those living alone were not at greater risk of institutionalization or death despite being older than those living with spouses may have occurred as a function of this sample (clients of a CPT) but raise the question 'at risk for what?'. It may be that this sample would show increased hospitalizations for nutrition- or medication-related problems or may have been abused financially had we been able to examine risk more directly.
Tierney (1997) suggests that the most important predictors of harm for persons with cognitive impairment living alone may be: (1) the etiology of the cognitive impairment; (2) the kinds of cognitive deficits exhibited; (3) the behavior disturbances present; and (4) existing social resources. Whether or not people with dementia living alone are indeed at increased risk of harm and how to predict those who will experience significant harm are yet to be determined. Furthermore, the interface between risk and service use is not at all clear. However, it is clear that efforts to understand these relations must continue so we may best meet the needs of persons with dementia within our society.
Safety Concerns for People with Dementia
- Dementia Action Collaborative. (2016). Safety Concerns for People with Dementia. U.S. Administration for Community Living, Administratin on Aging.
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