Dealing with the fear of developing dementia – The Star Online

Posted: March 18, 2020 at 1:42 am

Do I know Im at risk for developing dementia? You bet.

My father died of Alzheimers disease at age 72; my sister was felled by frontotemporal dementia at 58.

And thats not all: Two maternal uncles had Alzheimers and my maternal grandfather may have had vascular dementia (In his generation, it was called senility).

So what happens when I misplace a pair of eyeglasses or cant remember the name of a movie I saw a week ago?

Now comes my turn with dementia, I think. Then I talk myself down from that emotional cliff.

Am I alone in this? Hardly. Many people, like me, whove watched this cruel illness destroy a family member, dread the prospect that they too might become demented.

The lack of a cure or effective treatments only adds to the anxiety.

Just last week, news emerged that another study trying to stop Alzheimers in people at extremely high genetic risk had failed.

How do we cope as we face our fears and peer into our future?

Should I get tested?

Andrea Kline, whose mother, as well as her mothers sister and uncle, had Alzheimers disease, just turned 71 and lives in Boynton Beach, Florida in the United States.

Shes a retired registered nurse who teaches yoga to seniors at community centres and assisted-living facilities.

I worry about dementia incessantly. Every little thing that goes wrong, Im convinced its the beginning, she told me.

Because Kline has had multiple family members with Alzheimers, shes more likely to have a genetic vulnerability than someone with a single occurrence in their family.

But that doesnt mean this condition lies in her future. A risk is just that: Its not a guarantee.

The age of onset is also important. People with close relatives struck by dementia early before age 65 are more likely to be susceptible genetically.

Kline was the primary caregiver for her mother, Charlotte Kline, who received an Alzheimers diagnosis in 1999 and passed away in 2007 at age 80.

I try to eat very healthy. I exercise. I have an advance directive and Ive discussed what I want (in the way of care) with my son, she said.

Lately, Ive been thinking I should probably get a test for APOE4 (a gene variant that can raise the risk of developing Alzheimers), although Im not really sure if it would help, she added.

Maybe it would add some intensity to my planning for the future.

I spoke to a half-dozen experts for this article. None was in favour of genetic testing, except in unusual circumstances.

Having the APOE4 allele (gene variant) does not mean youll get Alzheimers disease. Plenty of people with Alzheimers dont have the allele, said Dr Mark Mapstone, a professor of neurology at the University of California, Irvine.

And conversely, plenty of people with the allele never develop Alzheimers.

Dr Tamar Gefen, an assistant professor of psychiatry and behavioural sciences at Northwestern Universitys Feinberg School of Medicine, strongly suggests having an in-depth discussion with a genetic counsellor if youre considering a test.

Before you say I have to know, really understand what youre dealing with, how your life might be affected and what these tests can and cannot tell you, she advised.

Karen Larsen, 55, is a social worker in the Boston area.

Her father, George Larsen, was diagnosed with vascular dementia and Alzheimers at age 84, and died within a year in 2014.

Larsen is firm: She doesnt want to investigate her risk of having memory or thinking problems.

Ive already planned for the future. I have a healthcare proxy and a living will and long-term care insurance.

Ive assigned powers of attorney and Ive saved my money, she said.

Eating a healthy diet, getting exercise, remaining socially engaged I already do all that, and I plan to as long as I can.

What would I do if I learned some negative from a test sit around and worry? she asked.

Types of tests

Currently, the gold standard in cognitive testing consists of a comprehensive neuropsychological examination.

Among the domains examined over three to four hours are memory, attention, language, intellectual functioning, problem-solving, visual-spatial orientation and perception.

Brain scans are another diagnostic tool.

CT (computed tomography) and MRI (magnetic resonance imaging) scans can show whether parts of the brain have structural abnormalities or arent functioning optimally. PET (positron emission tomography) scans can demonstrate the buildup of amyloid proteins a marker of Alzheimers.

Also, spinal taps can show whether amyloid and tau proteins are present in cerebrospinal fluid.

A note of caution: While amyloid and tau proteins in the brain are a signature characteristic of Alzheimers, not all people with these proteins develop cognitive impairment.

Several experts recommend that people concerned about their Alzheimers risk get a baseline set of neuropsychological tests, followed by repeat tests if and when they start experiencing worrisome symptoms.

When it comes to thinking and memory, everyone is different, said Dr Frederick Schmitt, a neurology professor at the University of Kentucky.

Having baseline results is very helpful and allows us to more carefully measure whether, in fact, significant changes have occurred over time, he said.

Nora Super, senior director of the Milken Institute Center for the Future of Aging, watched her father, Bill Super, and all three of his siblings succumb to Alzheimers disease over the course of several years falling, she said, like a row of dominoes.

One of her sisters was tested for the APOE4 genetic variant; results were negative.

This is no guarantee of a dementia-free future, however, since hundreds of genes are implicated in Alzheimers, Lewy body dementia, frontotemporal dementia and vascular dementia.

Rather than get genetic or neuropsychological tests, Super has focused on learning as much as she can about how to protect her brain.

At the top of the list: managing her depression, as well as stress. Both have been linked to dementia.

Also, Super exercises routinely and eats a MIND-style diet, rich in vegetables, berries, whole grains, nuts, fish and beans.

She is learning French (a form of cognitive stimulation), meditates regularly, and is socially and intellectually active.

According to a growing body of research, physical inactivity, hearing loss, depression, obesity, hypertension, smoking, social isolation, diabetes and low education levels raise the risk of dementia.

All of these factors are modifiable.

What if Super started having memory problems?

I fear I would get really depressed, she admitted.

Alzheimers is such a horrible disease: To see what people you love go through, especially in the early stages, when theyre aware of whats happening, but cant do anything about it, is excruciating.

Im not sure I want to go through that.

Assist Prof Gefen said she tells patients that if (cognitive testing) is something thats going to stress you out, then dont do it.

Making preparations

Nigel Smith, 49, had a change of heart after caring for his mother, Nancy Smith, 81, whos in hospice care in the Boston area with Alzheimers.

When he brought his mother in for a neuropsychological exam in early 2017 and she received a diagnosis of moderate Alzheimers, she was furious.

At that point, Nancy was still living in the familys large home in Brookline, Massachusetts, which she refused to leave.

Eventually, after his mother ended up in the hospital, Nigel was given legal authority over her affairs and he moved her to a memory care unit.

Now, shes deteriorated to the point where she has about 5% of her previous verbal skills, he said. She smiles, but she doesnt recognise me.

Does he want to know if something like this might lie in his future?

A couple of years ago, Nigel said he was too afraid of Alzheimers to contemplate this question.

Now hes determined to know as much as possible, not so much because Im curious, but so I can help prepare myself and my family.

I see the burden of what Im doing for my mother and I want to do everything I can to ease that burden for them.

Kim Hall, 54, of Plymouth, Minnesota, feels a similar need for a plan.

Her mother, Kathleen Peterson, 89, a registered nurse for over 50 years, was diagnosed with vascular dementia five years ago.

Today, she resides in assisted living and doesnt recognise most of her large family, including dozens of nieces and nephews who grew up with Hall.

Hall knows her mother had medical issues that may have harmed her brain: a traumatic brain injury as a young adult, uncontrolled high blood pressure for many years, several operations with general anaesthesia and an addiction to prescription painkillers.

I dont share these and that may work in my favour, she said.

Still, Hall is concerned.

I guess I want to know if Im at risk for dementia and if there is anything I can do to slow it down, she said.

I dont want what happened to my mother to happen to me.

Probably, she speculated, shell arrange to take a neuropsychological exam at some point.

Several years ago, when I was grieving my sisters death from frontotemporal dementia, my doctor suggested that a baseline exam of this sort might be a good idea.

I knew then that I wouldnt take him up on the offer.

If and when my time with dementia comes, Ill have to deal with it.

Until then, Id rather not know. By Judith Graham/Kaiser Health News/Tribune News service

Kaiser Health News is a US national health policy news service. It is an editorially-independent programme of the Henry J. Kaiser Family Foundation.

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