Our society celebrates independence—but our narratives around Alzheimer’s and related dementias don’t consider those who are living alone.

My first professional position in the field of aging hooked me for life. It was 1980, and I was part of a small group of hourly workers tasked with getting a survey completed by every resident over age 60 in the town of Westport, Massachusetts. The data collection was for the Council on Aging, with the goal of eventually developing a strategic plan for aging services in the town for the next decade.
 
What hooked me — I should say, WHO hooked me — were the many fiercely independent older persons living alone and keeping body and soul together. Since that time, I have been inspired by the examples of my mom, mother-in-law, and various aunts, who all lived the same way.
 
A narrative of independence runs deeply through our society. Our culture celebrates the stories of those who pull themselves up from the proverbial bootstraps, who forge their own way despite adversity and challenges. However, our culture is still in need of change and transformation when we think of the independence of older adults. We often don’t celebrate their independence or respect their decision to live alone. Instead of offering support in any form or a listening ear, we offer unsolicited advice or give in to worry. 
 
But what would the narrative be if any of these people lived alone with dementia — diagnosed or not — revealed or not to neighbors, employers, building managers, family, and friends? And what if it was progressive dementia like Alzheimer’s or some of the closely related irreversible dementias — meaning there will be inexorable decline and consequent risks?
 
The American societal narrative about Alzheimer’s is largely one of family caregiver support in the home, sometimes transitioning persons with dementia into some form of residential care when the care needs exceed family capacity to supply. And this narrative isn’t wrong: it’s merely incomplete, as it is estimated by the 2018 Alzheimer’s Association Facts and Figures report  that 1 million persons with Alzheimer’s live alone in the United States.

 

We take for granted that everybody has a network of family or friends to support them.

Memory loss gets a lot of attention in the Alzheimer community, but don’t forget abilities like judgement, numeracy, organizing tasks like making a pot of coffee or paying bills, or tracking time (such as is needed for medication routines). Thinking skills that degrade can also pose serious risk to persons living alone with dementia.
 
Surely some of those living alone with Alzheimer’s have support networks to wrap around them like my extra family in Rhode Island (five sisters, not to mention sons-in-law, grandchildren, and a cat!) who wrapped around our mutually beloved Evelyn — mom and matriarch of the family — so amazingly. Surely some of those living alone have neighbors who have become like family and check in daily, bring groceries, or assist with basic home maintenance.
 
But some of these 1 million living alone with Alzheimer’s must be the persons deemed by hospital emergency room staff as “frequent fliers.” Some must end up as protective services “cases,” or in jail, or in facilities for persons with mental illness. Some might be record holders for emergency medical or 911 police call outs to their homes.
 
Where is their support? Who is advocating for them? Can we find ways to foster their independence in the community but also ensure their safety and well-being? How do we help them best?
 
It’s likely that access to support is affected by living alone. When a large program is called the National Family Caregiver Support Act, you know this is a partly hidden dementia story; not every person with dementia has a family caregiver. In nearly every protocol I have seen in my work with Alzheimer’s clinical trials, access to clinical trials is limited to PWD (persons with dementia) with a caregiver, preferably living in the same household. The Alzheimer’s narrative we hear and know is almost always focused on the person with dementia plus the caregiver.

 

It’s our responsibility to come together as a society to support individuals who are living alone with Alzheimer’s.

There are a few bold researchers like Elena Portacolone  who are trying to capture the living alone narrative, and social isolation in older persons is starting to get some mindshare in the aging community. There are some nascent programs focused on this demographic, some of which are documented in this National Alzheimer’s and Dementia Resource Center (NADRC) report.
 
But there is still much more work to be done, and a big part of that work is building awareness and drawing attention to this narrative. To initiate dialogue at all levels of policy planning and community programming. To bring together those who are already implementing solutions to develop new ones for this growing population — whose needs are growing by the day.
 
These are the reasons why my business partner Kate Gordon and I hosted Living Alone with Dementia: A Solutions Summit in three cities. These day-long summits in Baltimore, MD, Orange County, CA, and St. Louis, MO, sought to educate and share best practices about how people are living alone with cognitive impairment, and convene colleagues from the field who have developed supportive solutions.
 
Our agenda included conversations with persons who are navigating life with Alzheimer’s or a related dementia, an overview of the numbers and types of single-person households in which they live, health and social risk factors like social isolation, and ethical dilemmas to consider. Solutions providers from social services, health care and technology sectors were among our featured speakers and moderators.
 
To this ongoing conversation, we welcome persons living with dementia and their caregivers, administrators and staff from care communities, Alzheimer’s and dementia care providers, dementia-friendly community leaders, health care systems leaders, elder abuse prevention workers, elder care managers and attorneys, hospital emergency department staff, and organizations directing care systems for persons dually eligible for Medicare and Medicaid.
 
Come join us as we seek solutions to bring this narrative to light, and to better support the persons living alone with Alzheimer’s in all our communities.
 
 
 
ABOUT THE AUTHOR
Mike Splaine is the owner and principal of Splaine Consulting, which he established after working on the public policy and advocacy staff of the Alzheimer’s Association for more than 20 years. He has been working in the field of health and long-term care since 1988, helping organizations achieve success in advocacy for health and long-term care issues. He combines his deep knowledge of policy and program development and management with his skills in public speaking, community organizing, adult education, media strategy, and public health communications. He is also CEO of a related firm, Cognitive Solutions, LLC, a specialized consultancy to healthcare providers focused on improvement of care for patients with cognitive impairment.