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What Happens to Solo Agers Who Develop Dementia?

Q. Sometimes when I have trouble sleeping at night, I scan the internet for interesting news stories. I came upon one in particular that was incredibly disturbing. It was about a woman named Joyce who was estranged from her family and kept to herself in her home. She was found dead on her sofa by a neighbor. According to her autopsy, she had fallen ill and died two years prior to being discovered. 

Of course this didn’t help me get to sleep.  In fact, my insomnia has gotten worse. I began thinking of people in similar situations, who are estranged from loved ones, or perhaps without a partner or children. What if they had dementia, and there was no one around to care for them? How can solo agers plan ahead for what would happen if they fell ill with an incurable disease? Thanks so much for your help!

A. The situation you describe is very sad indeed. It sounds extreme, but as you mentioned, brings to mind a very important point. What happens to older adults who lack family, for one reason or another, and develop dementia?

Family dynamics in our society have changed in the past several decades. Not everyone is getting married and/or having children. Sometimes family relationships are strained, and someone can easily reach an advanced age without a spouse or children to help care for them or to ensure that they are getting the care that they need. 

At the same time, the incidence of dementia increases with age, and considerable support and care are needed to live well as the condition progresses. The vast majority of this care is provided by spouses and children and often siblings. Seniors who lack family may be particularly vulnerable if they develop dementia. Until now, however, very little research has examined the topic.

Study Examines What Happens to Solo Agers with Dementia 

Janelle S. Taylor, a professor of Medical Anthropology at the University of Toronto, researches social and cultural dimensions of illness and health care. She is also the daughter of a mother who lived with dementia for a very long time. This prompted her to consider what would have happened to her mother if she had not been around. 

For the past several years, Janelle has been working with a team of researchers to find out what happens to older adults who are kinless, also called “elder orphans” (older people without a spouse or children on whom they can depend) or “solo agers” (older adults without children, living alone) if they develop dementia.

The research team used information collected as part of a long-running medical research study of dementia called the Adult Changes in Thought (ACT) study. Over the last three decades, the ACT study enrolled and followed several thousand older adults on factors that affect brain aging.  Taylor’s team examined the research data and administrative documents generated by the ACT study, with a focus on the circumstances and needs of older adults who were kinless when they developed dementia. Analysis of ACT documents, some of which contained clinical chart notes from participants’ medical records, proved to be informative source of data for researchers.

Findings from the Research Shed Light on Solo Agers with Dementia

The research team, led by Taylor, recently published its findings on solo agers with dementia:

  • It’s More Common than You Might Think: The team found that 8.4 percent of those surveyed were kinless at the time they developed dementia. They believe that “more of the research group would likely become kinless after the onset of dementia, upon the death of a spouse and/or child.” 
  • Anyone May Be Susceptible to this Situation: The life events that led people in the sample to be kinless at the time they developed dementia were quite varied. Some had never married or had children, but others had outlived both spouses and children. Some may have been isolated and/or lonely. Isolation and loneliness put you at greater risk for cognitive decline. In fact, social isolation was actually associated with about a 50 percent increased risk of dementia
  • The average age of the solo ager in the sample at the time they developed dementia was 87. Half were living alone at that point, and one-third were living with unrelated persons, such as hired caregivers. Most were women who became solo agers later in life and unexpectedly.
  • A person’s role as caregiver at the time they developed dementia, or prior to that, could have an impact on their own ability to access care. For instance, some in the sample group had previously moved to a residential setting to meet the needs of a spouse, which could mean that they were well-situated to access care later. On the other hand, at least one of the 64 kinless older adults with dementia was serving as caregiver for a roommate who also had dementia, which ultimately triggered an intervention when it led to a situation that was dangerous for both elders.
  • Some of the older adults in our sample seemed to have little support, but others received a good amount of support from relatives such as nieces, nephews, sisters, grandchildren, and others. Some received support from neighbors and friends that could in some cases involve quite extensive hands-on care. In many instances, however, neighbors and other community members appeared to have gotten involved only at moments of crisis, as a form of rescue.

Are You a Solo Ager? Prepare and Plan Ahead

The difficulties involved with aging alone are significant, especially if you have or develop dementia, but not insurmountable. The key is to recognize the challenges you may encounter and plan ahead of time to meet them. Here are some steps you can take early on, before dementia is even an issue:

Maintain social connections: It’s important to find a community, whether you’re active in your church, synagogue or mosque, a local senior center, or volunteer group. These are the people who’ll help you in the early stages before you need a caregiver coming to your home – the neighbors and friends keeping eyes on you earlier in the process. 

Try to maintain your social connections by seeing and talking to people each day. This may mean going out on a limb and knocking on a neighbor’s door. Sometimes help comes in surprising ways or from surprising places.

Build a Support System: If you do not have close family members, try to build a network of people you can rely on. Your old friends may be deceased or may not live nearby, but there are often opportunities for seniors to make new friends through volunteering, classes, clubs, and other community resources for older people. The downside here is that there are also people who pray on elders and try to victimized them, taking advantage of their loneliness and isolation.

Make Use of Technology: Many older people are intimidated by adopting smartphones and all the technological advances that come with them. However, some of these new or relatively new technologies can be very helpful to seniors. Communicating via phones and social media apps can keep you from becoming isolated by connecting you with virtual communities, while medical alert systems and monitoring devices allow you to access help in an emergency.

Take Care of Your Health, Especially Eating Well and Exercising: The longer you can keep your health, the better. This is where you can take control of the process.

Move to a Continuing Care Community: If you are a solo ager, you should strongly consider moving to a continuing care retirement community (also called life plan communities) if you can afford it. People who move into these communities typically start at the level of independent living, with the ability to progress into assisted living and eventually nursing home care if needed, all within the same community and with a built-in system of professional services and supports.

Move to an Over 55 Community or an Active Adult Retirement Community: These communities come with a built-in support system of neighbors in situations similar to yours, often along with professional services and supports. These communities typically do not have an entrance fee or entrance deposit, and the monthly rent is often much more reasonable than a continuing care retirement community.

If you Already Need Care, Move to an Assisted Living Community. According to caregiver.com, there are almost 30,000 assisted living homes in the United States, housing approximately 1.2 million residents. Residents of assisted living communities range from individuals who are still mobile and able to function with just a little help with day-to-day activities, up to people who are severely disabled and reliant on wheelchairs, or even bedridden. Almost all assisted living communities also offer “memory care” for people with dementia who are still mobile and need to live in a locked-down unit because they might otherwise wander off and get lost and injured. 

Age in Place with In-Home Care When Needed: If you are elderly but still independent and have a strong desire to age in place, you can of course plan to hire a home health care agency (there are hundreds of such agencies in the DC Metro area covering Northern Virginia, DC, and suburban Maryland) to come assist you when needed, but this is not necessarily a good plan because this plan depends on you realizing that you have the need for this type of home care. If you have a sudden illness or accident, you may not be able to arrange for this type of care; you may wind up on the floor unconscious for days, or worse, as in the example at the beginning of this article. If you develop dementia, you may think you’re fine and not realize that you need any type of home care assistance; even if you do realize it, you may not have the wherewithal (because of the dementia) to find and arrange for the care that you need.

Age in Place with Assisted Living at Home:

If you are elderly but still independent and plan to age in place, then because of the risks of aging in place without a support system, you should look into a professional elder care service that will provide you with a professionally organized in-home monitoring and assistance as necessary, including regularly-scheduled phone calls and wellness visits. You will need to enter into a written agreement with the service provider(s) involved. The fees for this type of service can differ greatly depending on the service package you need (for example: annual visits, quarterly visits, monthly visits, weekly visits, or daily visits). There are not many of these services that I am aware of in the DC Metro area, but here are a few: 

Don’t Forget the Legal and Financial Stuff: If you don’t have family members who can help you sort out legal and financial matters, hire a professional firm trained in handling them, such as our attorneys and professional staff here at the Farr Law Firm, which provides comprehensive estate planning and elder law services for seniors in Virginia, Maryland, and DC.

Get Your Legal Paperwork in Order: It’s important to plan in advance before you become incapacitated. You should express your wishes clearly in an Advance Medical Directive, preferably our proprietary 4 Needs Advance Medical Directive® and choose someone you trust as a health care agent. This does not need to be a family member; in fact, it may be in your best interest to choose a friend or a legal professional or a health care professional who understands your wishes. It typically cannot be your personal physician. The Farr Law Firm does offer these services.

Estate planning is crucial for solo agers. Who will make medical decisions for you when you are not able to? Who will pay your bills and manage your legal and financial affairs when you are not able to? If you haven’t worked with an experienced Elder Law Attorney, the answer to this question becomes quite complicated but typically involves someone going to court (sometimes an agency of the county or city where you live), to have you declared incompetent and to appoint someone as your guardian and conservator. Often this will be an attorney or a professional guardian or conservator, someone chosen by the court may know nothing about you. 

Maybe it would be your next closest family member, if you have one. Most likely, it would not be your best friend or whomever you would choose. Even if your closest friend would be your first choice, your friend would have no legal power unless you have your wishes legally documented in a properly executed Advance Medical Directive.

Finally, what will become of your things if you should unexpectedly pass away? Who would have legal rights to your belongings, to your home, to your pets? You may think you know the answers, but without clearly outlining your wishes, you have very little control over the matter. An experienced Elder Law and Estate Planning attorney such as myself can easily get you on the path to having these affairs in order.

If you know someone who is living alone with dementia, the Alzheimer’s Association has some helpful tips here. The following national organizations can also offer helpful resources:

AARP—Provides helpful information to seniors to help improve quality of life and provides access to Community Connection Tools.

Area Agencies on Aging (AAA)—Provides information and assistance with programs including nutrition and meal programs (counseling and home-delivered or group meals), caregiver support, and more. 

Eldercare Locator—A free national service that helps find local resources for seniors such as financial support, caregiving services, and transportation. 

National Council on Aging—Works with nonprofit organizations, governments, and businesses to provide community programs and services. This is the place to find what senior programs are available to assist with healthy aging and financial security, including the Aging Mastery Program® that is shown to increase social connectedness and healthy eating habits.

Planning for When You Live Alone and Are Suffering from Dementia

If you or a loved one live alone and are suffering from dementia, be sure that your wishes are spelled out before you become incapacitated and are available for your loved ones in our proprietary 4 Needs Advance Medical Directive®, which includes our proprietary Long-term Care Directive® along with a Dementia Directive. If you have not done Long-Term Care Planning, Incapacity Planning, or Estate Planning (or if your Planning documents are more than five years old), call us here at the Farr Law Firm to make an appointment for an initial consultation:

Northern Virginia Elder Planning: 703-691-1888 
Fredericksburg, VA Elder Planning: 540-479-1435 
Rockville, MD Elder Planning: 301-519-8041 
Annapolis, MD Elder Planning: 410-216-0703 
Washington, DC Elder Planning: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.