Partners in FTD Care, Winter 2021
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by Mary O’Hara, LCSW

While living alone in early corticobasal degeneration (CBD) may be possible, it will eventually stop being a safe option as the disease advances. Progressive impairments in walking, motor skills, thinking, language, balance, judgment, swallowing and the ability to plan and carry out activities combine to prevent persons diagnosed from adequately tending to their own health and wellbeing.

Falls are one of the most common risks to health and safety for persons with dementia living alone (Gould et al., 2010, Douglas et al., 2011). For someone living with CBD, a movement disorder that falls under the umbrella of frontotemporal degeneration (FTD), those risks are magnified. Persons living alone with early CBD may also make mistakes around medications and miss medical appointments. Because of cognitive and physical changes, they are also vulnerable to self-neglect, financial exploitation, poor nutrition, and dehydration. Impairments in reasoning and insight suggest that persons diagnosed are unable to recognize their need for help, or to arrange needed services on their own (Gould et al., 2015). Additionally, many people living along with dementia, including CBD, experience isolation and loneliness, which have further negative effects on their health (Johannessen & Möller).

Ongoing Assessments and Available Supports

Nevertheless, living alone with early CBD is possible; it requires a thorough understanding of symptoms, risks, available community services and the person’s own strengths. Outside assistance is also necessary to ensure that the proper safety nets are in place and one’s needs are continually assessed.

To ensure that a person can safely live alone in early CBD, family members, social service agencies, and/or a guardian must monitor the situation regularly and implement care transitions as needed. If the person diagnosed is unable to understand or implement decisions around their care and refuses assistance, the next step is often a report to Adult Protective Services or the local equivalent agency (Gould et al., 2018).

Few evidence-based programs or practices exist to support living alone with dementia. However, innovative practices such as Friendly Visitor programs, dementia village models, home care services, and police programs can offer some support. In some areas, gatekeeper programs recruit mail carriers, utility meter readers, ministers, pharmacists, and others who interact with adults in their community, and train them to identify people with dementia who are living in isolation who may need assistance. These “gatekeepers” can then refer them to a central agency for resources like medication reconciliation, home-delivered meals and home care services (Gould et al., 2015).

Increasing Support Over Time

As the saying goes, “Better to plan a month too early than a moment too late.” Due to CBD’s progressive nature, the person diagnosed should work with their professional and family caregivers as early as possible to establish a plan for future care. Doing this early is crucial, as it allows the person with CBD to participate in making decisions about the care options available to them when they can no longer live alone. Since FTD disorders are unpredictable, it is best to be prepared with a plan – one that balances the increasing needs of the person diagnosed with their sense of self, independence, care wishes and quality of life.

In addition to consulting with occupational, speech and physical therapy services, it may help to make a list of what activities can be safely done alone, and which ones will require support to help maximize the independence of the person diagnosed. Case managers, through a local Aging and Disability Resource Center, or private care managers are excellent resources to assess one’s safety and monitor their care needs over time. Helping the person to connect with peer support from in-person or online groups for people living with dementia can decrease isolation and increase quality of life.

If the person diagnosed is unaware of their limitations but has family caregivers advocating on their behalf, it is important to help them adjust to changes in their care routines. When they do not understand why additional or new supports are needed, make sure that trusted health care providers and other family and friends are involved to ease the transitions.

Supporting someone in early FTD who lives alone requires accepting certain risks while continuously adapting and implementing more support over time, as well as knowing that eventually, they can no longer live alone safely. This decision weighs heavily on persons diagnosed and families, but health care professionals can help determine when they have reached that point. As dementia diagnoses continue to increase, we must continue to talk about how to allow persons diagnosed to live alone if they choose, while still promoting their wellbeing and prioritizing their safety.

Tools for determining safe living for someone with dementia

• Tips for Living Alone with Early-Stage Dementia (National Institute on Aging)
• Dementia Care Practice Recommendations for Professionals Working in a Home Setting (pdf): Alzheimer’s Association

Resources for obtaining additional in-home care

• Eldercare Locator
• Aging Life Care Association
• Community Resource Finder

References
Douglas, A., Letts, L., & Richardson, J. (2011). A systematic review of accidental injury from fire, wandering and medication self-administration errors for older adults with and without dementia. Archives of Gerontology and Geriatrics, 52(1), e1–e10. doi:10.1016/j.archger.2010.02.014

Gould, E.; Knowels, M.; Wiener, J. (2018) Handbook for Helping People Living Alone with Dementia Who Have No Known Support. Report prepared for the U.S. Administration on Aging. RTI International.

Gould, E., Maslow, K., Lepore, M., Bercaw, L.,Leopold, J., Lyda- McDonald, B., Yuen, P., Wiener, J. (2015). Identifying and meeting the needs of individuals with dementia who live alone. Report prepared for Administration on Community Living. RTI International.

Johannessen A., & Möller A. (2013). Experiences of persons with early-onset dementia in everyday life: A qualitative study. Dementia, 12(4), 410–424.

See also:

• It May Not Be Parkinson’s: A Look at Corticobasal Degeneration
• Ask an Expert: “Corticobasal Degeneration” Or “Corticobasal Syndrome”?
• From a Caregiver’s Perspective: A Guide to Apraxia in CBS
• What to Do About… Corticobasal Degeneration
• Corticobasal Degeneration: Know the Signs, Know the Symptoms (pdf)
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