Recently published studies have linked dementia to diabetes and prediabetes, social isolation, a slowing gait, daytime naps and having three or more children. Another new analysis, led by researchers from the University of California, identified midlife obesity, physical inactivity and lack of a high school diploma as the three most important factors leading to dementia.
What’s talked about less often are the warning signs and next steps once dementia is suspected or diagnosed. The conversations shouldn’t be just about protecting individuals with dementia but also figuring out how to help them retain a sense of purpose and a manageable degree of independence.
And because dementia is usually caused by degenerative changes to the brain that can happen over years or even decades, discussions and decisions must be ongoing and flexible.
Financial advisors sit in in the perfect seat to detect potential signs of dementia and diminished capacity in clients, curate and share resources, and guide families on the financial implications. However, “we don’t spend enough time as an industry talking about this,” says Brian Leitner, a CFP and head of Mariner Platform Solutions. MPS supports Mariner Wealth Advisors’ more than 70 advisory teams across the country.
For many in the profession, “my guess is they feel uncomfortable. There are so many conversations clients and advisors don’t want to have,” he says. “But it’s our fiduciary responsibility and why we’re in this business,” he says, especially for those who call themselves holistic advisors.
Getting ahead of these issues “is in the best interest of clients and helps deepen the relationships – the same for any health conversations,” says Leitner.
Dementia isn’t a disease but a catchall term for symptoms that impair memory, language, problem-solving and other thinking skills used to perform daily tasks. Alzheimer’s disease accounts for 60% to 80% of dementia cases. Strokes are the second leading cause.
Strokes, chronic high blood pressure and hardened arteries can cause vascular dementia. Lewy body dementia is used to refer to two related diagnoses: dementia with Lewy bodies (abnormal protein deposits that accumulate in the brain) and Parkinson’s disease dementia. Head injuries can also cause dementia. Some people have multiple causes of dementia.
According to the “2022 Alzheimer’s Disease Facts and Figures” report published by the Alzheimer’s Association, 6.5 million Americans age 65 and up (roughly 1 in 9) are living with Alzheimer’s dementia. Approximately 73% of them are 75 or older. One third of the U.S. population age 85 and up has dementia. That’s a sharp increase from those age 75 to 84 (13.1%) and 65 to 74 (5%). About 200,000 Americans below 65 have early-onset dementia.
Early Warning Signs
“Dementia is tricky,” says gerontologist Molly Prues. “It’s probably the number one fear everyone has about their own aging or their loved ones’ aging.”
The disease presents itself differently in everyone, depending on which part of the brain is impacted, says Prues, CEO and founder of VistaLynk, a company that provides education on the issues that impact older clients and caregiving clients.
“Some people lose their executive functioning and can’t manage their appointments or their checkbooks. And you start to see those signs gradually. Like, ‘Oh gosh, Mom forgot her dentist appointment and she goes every six months.’ You think maybe it’s just confusion because she’s got a lot on her plate or a lot on her mind,” says Prues.
Hoarding — collecting things or letting mail and other items pile up — can also be a sign of dementia, she says. Personality changes could also occur. Someone who is kind and sweet can become very aggressive when they’re upset or angry, she says.
People with dementia can often mask their symptoms for a while so it’s important to pay attention and note episodes of confusion or personality changes, says Prues. In addition, “everybody wants to sort of tiptoe around what’s happening because they don’t want to alarm anybody — or they can’t deal with the fact that this is actually happening to themself.”
Red Flags for Advisors
Advisors should also be on the lookout for potential warning signs with clients. Forgetting appointments or people in your office (including members of their advisory team) could signal a problem, says Prues. So could the sudden inability to manage their finances, forgetting when their income taxes are due, large or unusual transactions, or behavioral changes, she says.
“They may be withdrawn or [uncharacteristically] coming in demanding things, or they may be suspicious. All of a sudden, they may be wondering, ‘What are people doing with my money?’” she says. “But they could equally be as vulnerable to fraud.”
A woman who’d been a single mom and always very independent was befriended in her late 80s by a gentleman who came to cut her lawn. “All of a sudden he was getting her Social Security checks and cashing them because she was having cognitive difficulties,” says Prues. “She allowed him to do all these things and he completely took advantage of her.” The victim’s daughter got the bank involved and it stopped the fraudulent activity — but by then the money was gone.
With older clients especially, “be aware of new people in their lives and even their own family members,” says Prues. “Unfortunately, most of the fraud that does occur in senior situations is by family members.”
“Does the son or daughter have the best of intentions or are they trying to take advantage of a situation? It’s hard to always know that, but that’s why having relationships with the entire family circle is helpful,” she says.
When the Wheels Fall Off
Adult children often feel less compelled to act when a parent with dementia lives with a spouse because that spouse may be compensating and keeping them sort of on track, says Prues. But if that healthier spouse gets sick and is hospitalized, “then you start to see the wheels come off the bus,” she says. In fact, “caregivers often predecease the person they’re caring for because of the demands.”
Encourage clients who are concerned about cognitive deficits (their own or a loved one’s) to ask their medical providers for a neurological evaluation, she says. Advisors should confirm that financial and healthcare powers of attorney are in place. They should also familiarize themselves with care options in their communities and the cost of care. “Families lean more on doctors to do the medical piece, but rely on financial advisors to determine how secure they are to afford the care,” says Prues.
According to Genworth’s latest Cost of Care Survey, median monthly costs in 2021 were $5,148 for a home health aide, $4,500 for an assisted living facility and $9,034 for a private room in a nursing home facility. However, the cost of having round-the-clock home health aides can be even higher than the cost of a private room in a nursing home.
Although individuals with dementia may be in denial and their family members may be hesitant to act, “I always say, ‘If they’re a risk to themselves or to others, it’s non-negotiable,’” says Prues.
“You don’t want them to leave the eggs on the stove and forget about them and burn their house down along with the building next to them,” she says. Or get lost while driving “and end up in a ditch off the highway somewhere.”
A Balancing Act
As much as well-meaning family members often want to protect loved ones with dementia and diminished capacity, it’s important they don’t smother the individual in bubble wrap.
Ideally, “it’s a two-way street: Individuals recognizing their own limitations, and families being able to have conversations based out of love and concern rather than demanding,” says Prues. “It’s a negotiation in some ways,” albeit not an easy one.
What’s critical to remember is that a person with dementia will still have feelings and emotions no matter how impaired they become by dementia, says Prues. These functions are regulated by a different part of the brain than the part that dementia strikes. Prues likes how this is explained in the “Bookcase Analogy” from the Alzheimer’s Society.
“I think sometimes we get so caught up in managing the symptoms or managing what needs to be done, that we forget that person still needs to feel and does feel,” she says.
Jana Shoulders, a managing director with Mariner Wealth Advisors in Oklahoma, is very cognizant of being sensitive to the financial and emotional needs of clients who’ve developed dementia and mental incapacity. They often continue to attend planning meetings with their spouse or trusted contact because maintaining routines is important for those with dementia, she says.
Meeting clients on their level of understanding is important. An advisor on one of her teams continues to have coffee with a client who has dementia. At this point with this client, “we don’t ever talk about the finances, but that seems to work just fine,” she says.
Shoulders and her colleagues help all clients identify early on who should be their trusted contacts. This has led to more successful outcomes than waiting for dementia or incapacity to strike and then “having to scramble,” she says.
“We have had numerous cases where the client’s memory loss was apparent — forgot meeting dates; forgot what they were told a week ago or an hour ago or made comments/conversation that did not make sense — either in person or on the phone,” she says. “We’ve contacted the trusted contact to discuss the observations, and most times, the trusted contact has not been surprised because they’ve had suspicions, if not direct experience, with similar behavior.”
“We did have a circumstance where the wife was in denial that her husband had dementia. After a candid conversation with her, she admitted that he was demonstrating strange behavior at home and agreed that action needed to be taken. She then became more involved in all aspects of their affairs,” says Shoulders. “We also suggest that they seek medical help if they haven’t done so yet.”
Her teams contact clients’ outside advisors if they have permission; otherwise, they ask the trusted contact to make those people aware of their concerns.
When clients are “in denial and dangerously on the edge and can still make money movements or buy-sell,” Shoulders says, she and her colleagues speak with trusted contacts about eliminating their access to Mariner-managed accounts. Although “that can be a tricky situation,” she says, “we can contain the damage.” That doesn’t mean clients with dementia lose direct access to all their money. Typically, every client has a special-situation account or play-money account outside Mariner, she says.
Shoulders’ teams have helped clients with dementia freeze their credit. “We approach the conversation with, ‘This is a good financial security measure we recommend to almost everyone,’” she says. And “given the many security breaches and identity theft cases, almost everyone is concerned about it and wants to mitigate the risk.”
When Mom or Dad Doesn’t Want to Move
It’s a common theme for people with dementia or diminished capacity to deny that they need to change their home environment, says Shoulders. She and her colleagues help family members discuss this issue in different ways.
“We’ve joined meetings where we help them understand that ‘aging in place’ is something we’ve planned for and they have resources to pay for assistance,” she says. “We will also suggest that they engage their trusted medical professionals to inspire them to make good choices so they can remain at home.” Good choices include allowing help in the home and putting in place fall-prevention measures, she adds.
Annalee Kruger, a social worker and president of Care Right Inc., a nationwide senior care planning/aging plan consultant and virtual patient advocate, says families should consider installing cameras so they can see what is happening with their loved ones at home.
When the husband of a woman with dementia ended up in the hospital for his own multiple health issues (he had been his wife’s primary caregiver for many years), Kruger recommended adding companion care and a camera in their apartment while she looked for facilities that could care for the couple. The images were disturbing.
“Through the camera, the family learned that their mom has her days and nights mixed up, she is drinking one to two bottles of wine a day, she is wandering around the apartment, and she is constantly on her cell phone calling everyone in her contact list (including her kids) with paranoid thoughts that her kids are trying to murder her,” says Kruger.
“As you may know, there is a massive shortage of healthcare workers and it took five weeks for one of the home-care companies to find workers to come to the apartment and be her companion,” says Kruger.
The woman was still driving when Kruger onboarded the family so she recommended a car GPS system and the Life 360 app for her phone. They learned she was getting lost and that she ran out of gas. “She had not had any recent medical/cognitive tests, so I recommended she get caught up on her ‘dementia appointments’ with her neurologist and have her evaluated for driving,” says Kruger. “She has since lost her license; the doctor felt she was unsafe to drive.”
“This family knew six years ago that she was diagnosed with dementia, but didn’t know how to manage her symptoms at all,” says Kruger.
Rotten Food and Sundowning
“Families need to take the time to research dementia — or whatever their loved one has — so they can better understand what to expect, how to direct their behaviors and comfort them, and how to better safeguard them because dementia patients have poor safety awareness and make poor decisions,” says Kruger.
“Sadly, because families are often in denial, or aren’t as involved in their loved one’s day-to-day lives, the families are often blindsided by how confused their parent is when they do visit,” says Kruger.
One man who called Kruger in crisis mode was contacted by the police when his father, who lived in another state, was found five hours from home in his dinged-up car with an expired license, expired registration and expired license plates. “When he arrived at his father’s apartment, he was totally taken aback. His father still had milk, chicken, salad from three months ago, when the son was last there, in the refrigerator. Opening the refrigerator made him gag, yet his father lived in this situation for many months,” she says.
Weight loss may be a sign that a person is struggling with dementia, says Kruger. That’s because they may no longer know how to prepare meals, use the stove or microwave or get to the grocery store. In addition, they may not eat the proper foods or realize food has expired —and may think they ate when they haven’t, she says.
Additional signs of dementia, notes Kruger, include not taking medications properly or at all (perhaps doubling up on meds because they forgot they already took them), missing doctors’ appointments because they don’t know the day of the week, and falling.
Many dementia patients “sundown” in the afternoon and evening, says Kruger, explaining that as the day progresses they become more confused, disoriented, agitated, paranoid, anxious, depressed and restless.
Police Need Better Training, Too
Some years ago, a friend’s mother escaped from the assisted living facility where she resided. He received a call from the staff asking if he knew where she was and he said, “With you, I presume.” They then found the spry nonagenarian hiding in the bushes on the grounds of the facility; she had climbed out a window on the ground floor. She was in the supposedly secure memory unit where residents couldn’t leave unless someone unlocked the door for them — and the staff hadn’t considered the windows. We’ve since heard other “escape” stories, too.
Although safety is a top priority, “memory-care units are the most expensive level of care and not everybody can afford to move into a secured unit,” says Prues. Nor does every family want that. But they should be aware that first responders might not be as protective as they expect.
A former Colorado police officer was recently sentenced to five years in prison for second-degree assault of a 73-year-old woman with dementia while arresting her on suspicion of shoplifting $13.88 of goods from Walmart. Police body-cam footage showed officers throwing and pinning her to the ground (she suffered a dislocated shoulder and broken bone) and surveillance video later showed the officers laughing while watching footage of the violent arrest. [Caution: These two videos are disturbing.]
Kruger has also seen the police act inappropriately with dementia patients. When she was a director of a memory care unit, a resident who was sundowning “became incredibly paranoid and barricaded himself in his apartment,” she says. “We had no choice but to call the police and this punk seemingly fresh from the Academy pulled a gun on my resident! I was appalled! It only obviously escalated my resident’s fear and agitation.”
“The same thing happened a few years later when a resident eloped from the care facility — police were called and they pulled a gun on this resident too!” she says.
Police departments need much more education on how to identify and approach dementia patients and how to manage the behaviors associated with dementia progression, including wandering, driving and getting lost, agitation, paranoia and sundowning, says Kruger.
Families can help the police by informing them that their loved one has dementia/memory impairment, having their loved one wear a dementia ID bracelet or pendant, and putting a note and contact information in their loved one’s purse or wallet in case they get lost, she says.
Prues notes that some communities, including San Diego County (where nearly 100,000 residents have Alzheimer’s or another form of dementia), offer dementia training for law enforcement personnel and maintain databases of those with dementia. According to the website of the Alzheimer’s Association, “Six out of 10 people with dementia will wander. It’s a matter of when – not if.”
More Than Numbers
Dementia is the journey no one wants to take but many families end up lost on this bumpy road. Clients need a lot of help with the financial-planning aspects: People typically live four to eight years after an Alzheimer’s diagnosis but can live as long as 20 years. Clients also need a roadmap of dementia resources and a caring advisor who’ll listen to their concerns and remind them that they or their loved ones still matter.
If you can be that person, you’re more likely to strengthen your client-advisor bonds, build multigenerational client relationships and be better prepared for your own family’s potential aging challenges.
Encourage clients to put in place aging plans (which Kruger wrote about in this Rethinking65 article) to address current and future care. Having these plans in place makes it easier for families to get through a dementia diagnosis without having to fly by the seat of their pants.
Even if you generally work with younger clients, it’s important to familiarize yourself with dementia.
“It boggles my mind that if a parent has a child with special needs, the parent researches what the disease is, what to expect, how it will impact their child, etc.” says Kruger. “Yet when our parents get diagnosed with dementia (or other chronic diseases), the adult kids rarely spend time really understanding what dementia means; what to expect; how to manage the mood, behavior and personality changes associated with the disease.”
Jerilyn Klein is editorial director of Rethinking65. How are you helping clients deal with dementia? Contact us.