How can seniors with cognitive impairment keep their independence?

More and more experts are pushing for less restrictive alternatives to drastic legal action such as guardianships

by Marilyn Perkins

America’s population is aging. The U.S. Census Bureau predicts that, by 2034, there will be more adults over 65 than children, and The Administration for Community Living projects the number of seniors over 85 will double between 2020 and 2040.

With that shift will come more people than ever being diagnosed with dementia and cognitive impairment-causing conditions such as Alzheimer’s disease. Nearly one out of every three seniors over the age of 85 has Alzheimer’s dementia, and the annual incidence of Alzheimer’s is projected to double by 2050.

These conditions cause a person’s decision-making abilities to deteriorate, making it increasingly difficult to manage personal, financial and health care affairs independently. In these cases, legal interventions — often in the form of full or partial guardianships — can come into play.

But a growing number of physicians, lawyers and policymakers are bringing attention to how drastic legal action such as guardianships can put seniors’ livelihood and well-being at stake, and they’re pushing for less restrictive alternatives. One of those alternatives is a framework called supported decision-making.

“When I think about something like Alzheimer's disease, I think of it as a disease of autonomy,” says Emily Largent, a professor of medical ethics and health policy at the University of Pennsylvania and proponent of supported decision-making.

“It affects people's ability to make decisions about what's important to them,” she continues. “One of my big concerns is that when we look at tools like guardianship, we're stripping people of decision-making authority prematurely.”

She explains that, in supported decision-making, an adult with cognitive impairment relies on a trusted person or group to assist them through choices around finances, health care, housing or any other complex issues in their lives. It can include assistance in understanding information, communicating preferences, exploring alternatives and considering potential consequences. Supporters may include family members, friends, advocates or professionals who work collaboratively with the person to enable them to exercise their decision-making autonomy. The process emphasizes that, at the end of the day, it’s the individuals’ decision, rather than a guardian’s.

“Even though somebody's helping them, they retain the power over their own life,” says Largent.

The framework also lies in contrast to surrogate decision-making, an alternative to guardianship in which someone is authorized to make decisions on behalf of another person deemed incapable of making those decisions themselves.

The problem with guardianship

Guardianship came to the national forefront in 2021, when the #FreeBritney movement highlighted the alleged abuse in pop star Britney Spears’ conservatorship imposed over her mental health issues. Spears detailed the far-reaching control over her personal and professional life she endured during a widely watched trial that resulted in her release from the conservatorship.

But while Spears’ high-profile case revealed the reality of guardianship exploitation to a larger audience, it wasn’t representative of what most guardianships look like. The majority of people in guardianships are elderly, residing in health care facilities with some degree of cognitive impairment.

While full or partial guardianships can be necessary and even helpful for seniors with dementia, they can also open a door to abuse and exploitation, and can make people feel that they’re losing what little sense of self they have left.

“This is an issue of the most important fundamental rights: What it means to be a person, to make decisions about your life, about your health care, about where you live, what happens with your possessions, your money, who you see,” says Karen Buck, executive director of the SeniorLAW Center. “Every aspect of your life is potentially at risk with guardianship.”

Valerie Snow, an attorney with SeniorLAW Center who represents adults in guardianships or facing guardianship petitions, says that ageism is a big factor in why the mistreatment of seniors in guardianships has gone overlooked for so long.

“Older people are often ignored and devalued,” agrees Buck. “Their voices are unheard.”

Supported decision-making

Supported decision-making was first introduced as a way for young adults with developmental disorders such as Down Syndrome to avoid lifelong guardianships. Researchers like Largent are still working to adapt the approach for seniors living with cognitive impairment and dementia, as most studies conducted so far have focused only on younger adults.

“The studies that have been done with these younger adults, generally speaking, have found that they feel happier, more independent, they have greater self confidence, and they have a greater sense of control over what happens to them,” says Largent.

The pilot projects also show a much lower potential for abuse and exploitation compared to guardianship.

However, supported decision-making for seniors still faces a number of challenges. Compared to younger adults with developmental disabilities, cognitive abilities in older adults are less stable. A person who has Alzheimer’s disease may experience poor memory one day, clarity the next; and ultimately, their memory will likely deteriorate over time.

That means supported decision-making strategies for older adults need to be flexible day-by-day, and perhaps transition into guardianships over time.

Proponents of supported decision-making also admit that it isn’t a solution for everyone. For those with severe cognitive impairment or dementia, guardianship or surrogate decision-making might be the only option.

Still, a physician and director of the Penn Memory Center Jason Karlawish emphasizes the importance of pursuing arrangements that let seniors with cognitive impairment keep their autonomy.

“Guardianship is a method of last resort,” says Karlawish. “It's a tool that should be in the toolbox, but it should be used with great care and caution.”

And like successful guardianship, supported decision-making requires a person to have someone in their life who, in the words of Karlawish, is “trustworthy, reliable and accessible.”

Karlawish cautions that finding that balance can be difficult, even with spouses and adult children.

Legal status

As of 2023, over a dozen states, including California, Texas and the District of Columbia, legally recognize supported decision-making. In Pennsylvania, it remains an informal mechanism.

Largent says it’s still possible to informally develop a supported decision-making arrangement for seniors, but that privacy-oriented institutions like banks and health care providers may not recognize it.

For anyone considering a supported decision-making arrangement — or any other alternative to guardianship — for themselves or a loved one, Snow recommends planning ahead as much as possible.

“Putting the person in the driver's seat is the most important thing you can do,” she says. “If you don't plan ahead, you might end up under a guardianship where you are not in the driver's seat, and you have very little agency over these big things that affect you.”

While the state doesn’t have any supported decision-making laws on the books, Pennsylvania representatives are on the forefront of the national stage for guardianship reform. Senators Bob Casey and John Fetterman recently introduced a bill to standardize the nation’s patchwork of guardianship laws and push for less-restrictive alternatives like supported decision-making.

Karlawish says he thinks it’s time for the legal and medical framework that helps seniors with cognitive impairment maintain their autonomy to expand. He points back to a similar moment in the late 1980s and early ’90s, when new technologies such as life support systems allowed doctors to prolong the lives of patients who once would have died.

From this explosion in medical technology came legal frameworks like surrogate decision-making and living wills. “That took away a lot of ethical dilemmas and anxieties that dominated medicine in the late 20th century,” explains Karlawish.

Now Karlawish says it’s once again time for policy to catch up to medicine. As lifespans stretch and treatments for dementia cause seniors to live with mild cognitive impairment for longer, he believes supported decision-making will be more relevant than ever.

Largent agrees. “I think we should really keep people empowered as long as possible — and this is a way of doing that.”

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How can seniors with cognitive impairment keep their independence?