Handbook for Helping People Living Alone with Dementia Who Have No Known Support

As dementia progresses, individuals experience an increasing need for support as a result of declines in memory, cognition, and decision-making. Studies indicate that 28 to 34 percent of people with dementia live alone (Amjad et al., 2016; Ebly et al., 1999; Nourhashemi et al., 2005; Wattmo et al., 2014). People living alone with dementia are at high risk for self-neglect, malnutrition, injury, medication errors, financial exploitation, social isolation, and unattended wandering (Acierno et al., 2010; Bourgeois et al., 2009; Douglas et al., 2011; Evans et al., 2016; Gould et al., 2010; Harris, 2006; Miranda-Castillo et al., 2010; Nourhashemi et al., 2005; Peterson et al., 2014; Rowe & Glover, 2001; Wattmo et al., 2014). Although many people living alone have a caregiver nearby, some do not.

There are several explanations as to why people with dementia may be alone. Living alone may be a personal choice, a circumstance of outliving all family and friends or possibly a result of others choosing to discontinue contact. A recent study (Evans et al., 2016) presents other circumstances that may result in a person living with dementia living alone without support:

• living alone for a short period of time while the caregiver is hospitalized or some other temporary situation, or
• living alone unexpectedly because of the death or nursing home placement of the caregiver.

Another possible challenging scenario would be that of a person living with dementia residing with someone who cannot provide meaningful support, supervision, or companionship such as an adult child who has a drug or alcohol addiction.

People with dementia who live alone are much less likely than people with dementia who live with others in the community to have been diagnosed with the condition (Lehmann et al., 2010), and because individuals living alone are less likely to recognize their own limitations, they are unlikely to seek the help they need. A recent study found that lower cognitive ability actually predicted fewer hours of home help service, which suggests that these individuals were not able to request the assistance they needed (Wattmo et al., 2014). Additionally, people with dementia who live alone do not manage daily activities as well or at all when they feel lonely (Svanstrom & Sundler, 2015). In the absence of readily identifiable informal supports (e.g., unpaid assistance from family or friends), the person will need to rely on social services, medical, and legal professionals for assistance to remain safe in their home.

The goal of this handbook is to be an action guide for social services, legal, and medical professionals to help a person living with dementia who has no known informal supports. The handbook includes strategies for assessing risk, identifying individuals willing to help (including family and friends), determining decision-making capacity, options for helping the person maintain their independence, and the basics of guardianship or conservatorship.