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?

Aging family members: Mental competency and the courts

Cognitive impairment can have a significant impact on one’s life and the lives of family members. So, it’s essential to plan for the possibility and assure appropriate documents are in place. (iStockphoto)

By Teresa J Rhyne

Losing mental competency is something everyone worries about as they age. It’s also something most children worry about on behalf of their parents.

Cognitive impairment can have a significant impact on one’s life and the lives of family members. So, it’s essential to plan for the possibility and assure appropriate documents are in place. But it’s also important to know when a power of attorney or change in trustee may be activated as a result of a person’s diminished mental capacity and what that does and doesn’t mean.

The process isn’t as straightforward as many think.

The presumption of capacity

The California Probate Code provides a presumption that all persons have the capacity to make decisions and to be responsible for their acts or decisions. The law specifically provides that a person who has a mental or physical disorder may still be capable of contracting, conveying, marrying, making medical decisions, executing wills or trusts and performing other actions.

In fact, the American Bar Association has a rule requiring lawyers to presume a client’s capacity and maintain a normal client/lawyer relationship (including confidentiality) even when a client may exhibit signs of cognitive impairment.
Like lawyers, doctors are to presume capacity and work with their patients to allow them to make their own decisions for as long as possible. A patient who cannot make major or more complex decisions may still be able to make smaller, simpler decisions.

Determining incapacity

A physician’s diagnosis of dementia or any other mental impairment is not a determination of mental incompetence.

Likewise, a doctor signing a statement that a patient lacks the ability to make their own financial decisions or handle their own affairs is not a determination of legal incapacity — only a judicial order can do that.

Instead, the doctor’s written statement can be used to activate a power of attorney and/or allow a successor trustee to take over handling the trust matters, but there are limits on those documents.

Power of attorney

All persons, regardless of age, should have a power of attorney in place. A power of attorney designates an agent to act on your behalf should you become unable to handle your own affairs.

Generally, the power of attorney is activated either voluntarily (i.e., you sign agreeing to allow someone else to act on your behalf) or when two physicians sign off that a patient can no longer act on their own behalf.

Likewise, a living trust should provide how and when a new trustee takes over, in the event the trustmaker is unable to act. The trust should provide how that inability is determined — one or two physicians signing a statement, or perhaps a majority of a named committee of people.

A power of attorney and/or appointment as successor trustee of a parent’s trust works in many situations and might be all that is needed, provided family members are in agreement (i.e., siblings aren’t arguing over matters concerning the parent and making conflicting decisions).

A power of attorney is not, however, a determination of legal incompetence, and it does not take away any rights of the principal. Thus, you may have a valid power of attorney and appointment as a successor or co-trustee to act on behalf of your parent diagnosed with dementia, but that does not mean your parent cannot still sign checks, enter into contracts and engage in other transactions.

It is not uncommon for a parent to be led to this behavior at the urging of the child who does not have power of attorney, in an effort to curry favor or gain control. To prevent that, you may need to file for a conservatorship — a judicial determination that the person no longer has legal competency and an order stating who specifically may now act on that person’s behalf.

Conservatorship

When a conservatorship is ordered by a court, the conservatee loses some rights, including the right to enter into contracts on their own behalf.

In a conservatorship, a person, who may or may not be the person named in the power of attorney, is appointed conservator of the incapacitated client’s person and estate and is the only person who can act on the conservatee’s behalf. The determination will be made by a judge who will also appoint an attorney to act on behalf of the incapacitated adult to determine their desires and best interests.

However, California law provides that an attorney who moves for conservatorship over their client is violating attorney-client privilege. Thus, the attorney who drafted mom or dad’s power of attorney or trust, cannot be the attorney who assists you in getting a conservatorship over your parent. That attorney’s job is to protect the parent/client and act solely in their interest.

Stages of incapacity

When mom or dad start forgetting your name, misplacing keys, repeating things they just told you, is it time to activate the power of attorney? How about when they go for a walk and get lost? Forget to pay their bills? Start handing out money to any scammer that calls? Are diagnosed with a type of dementia?

The answer is “it depends.”

Generally, you’ll want to observe the parent much more carefully, with regular in-person visits (wear a mask!). Get a doctor’s opinion. Frequent communication with the parent and all siblings is desirable, so everyone knows what’s going on and can agree on a plan. Arguments and disagreements over who acts when will only add to the confusion and stress the parent may be feeling.

If the parent will voluntarily agree to activate a power of attorney or appoint a child as co-trustee (or sole trustee) of a trust so that a child can at least check bank account balances, ask questions at financial institutions, and obtain and review important documents, that’s a good first step. If they won’t voluntarily turn over any control, you will likely need a doctor’s opinion, and if problems still persist, a conservatorship may be needed.

The farther ahead you plan, the more options you will have available.

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Aging family members: Mental competency and the courts

Why Bankers, Financial Analysts And Doctors Need To Start Working Together

Forbes Guest post written by  
Jason Karlawish, MD, and Dan G. Blazer, MD, Ph.D.
 

Members, Institute of Medicine Committee on the Public Health Dimensions of Cognitive Aging

By the time the condominium association notified Renee Packel that she and her husband were months late paying their fee, Mr. Packel, who was in charge of the bill paying, had also made several erroneous business transactions. Their money had disappeared. A few months later, he was diagnosed with Alzheimer’s disease.

We expect the financial system will preserve our wealth, and that healthcare will preserve our health and, as they do this, that they have little need to work together. And yet, our aging brains are intimately entwined into the financial system. The failure to integrate the care of our wealth and our health is why cognitive impairment is discovered too late. We need a system that delivers whealthcare.

Of all life’s day-to-day chores, managing finances is among the most cognitively demanding. Declines in financial capacity are among the first signs that an older adult is suffering from cognitive impairment, which means that not only doctors but the banking and financial services industries are also diagnosing it. The more the industry steps up to meet this new role, the more likely aging Americans will preserve their wealth and their health.

Among older adults, especially those 75 and older, diseases such as Alzheimer’s and Parkinson’s are common causes of subtle and eventually disabling cognitive changes. A recent Institute of Medicine report found added reason for concern. Many older adults who are free of these diseases experience cognitive aging.

The report — “Cognitive Aging: Progress in Understanding and Opportunities for Action” — explains that, with aging, some cognitive abilities remain stable or even improve, particularly knowledge and vocabulary. Other abilities, however, decline, and among these, the most concerning is the capacity for fluid intelligence, thinking fast and flexibly, and holding multiple facts at the same time to reach a decision.

These changes help explain why aging Americans are not only more likely than their middle aged counterparts to make financial mistakes or decisions that are less than ideal for their financial well-being, but also to be victims of predators who exploit their vulnerability. The Investor Protection Trust found twenty percent of persons 65 and older self-reported being taken advantage of by activities such as unsuitable investments, inappropriate fees, or blatant fraud. Annual losses from fraud and abuse are estimated to be as high as $2.9 billion each year.

For aging Americans who have capably and independently managed and grown their wealth through most of their adult lives, after retirement, events may conspire to set them up for a crisis. Income becomes fixed. Funds are needed to pay for everyday care, and financial management becomes more complex. Declines in cognition, coupled with predators — whether strangers or family and friends – puts older adults at financial risk. These events coincide when the older adult no longer can reenter the work force or has the time to recover losses. The burden of the loss not only falls on the older adult, but their family and society as well.

Cognitive impairment is not simply a medical problem. It’s a public health problem, and the banking and financial services industries are at its front lines. America must think outside the biomedical box to envision a system that cares for our health and our wealth. (Continue Reading)

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Why Bankers, Financial Analysts And Doctors Need To Start Working Together