To the Editor:

I am the neurologist with early-stage Alzheimers disease mentioned in A Test for Alzheimers Poses a Tough Choice (Science Times, Dec. 24). Testing for Alzheimers, especially in the earliest stages, is controversial, even among dementia experts. For me, though, the early diagnosis was empowering. It removed the uncertainty about the cause of my mild cognitive impairment and allowed me to concentrate on doing everything that I could to slow the progression of the disease.

The first pathological changes in the brain, the amyloid plaques, appear up to 20 years before there is any cognitive impairment. My first symptoms of Alzheimers occurred 14 years ago when I started to lose my sense of smell and began to experience illusory odors. My cognitive impairment began six or seven years ago and has slowly worsened. Still, most people would have no idea that there is anything wrong with me.

It is becoming apparent that the first effective, disease-modifying medications will likely work in the early stages, before there has been too much damage to the brain. And there is already overwhelming evidence that lifestyle modifications like aerobic exercise and a heart-healthy diet slow the accumulation of amyloid and postpone cognitive impairment if they are started in the earliest stages.

Early testing for Alzheimers disease will not be for everyone, but I dont think that it should be rejected out of hand.

Daniel GibbsPortland, Ore.

To the Editor:

Would I really want to know? is a question your article highlights, but when Alzheimers enters a familys life, another question is almost always asked: What do I do now? At the Alzheimers Foundation of America, we hear it every day.

Support services are available for affected families, but greater federal investment is needed. Washington deserves praise for delivering over $2.8 billion in Alzheimers research funding in fiscal year 2020, but funding for the Administration for Community Livings Alzheimers programs, including specialized dementia caregiver training and support, is only $26.5 million. While its an increase from fiscal year 2019, the Centers for Disease Control and Prevention estimates that the number of Americans with Alzheimers will nearly triple by 2060, from over five million now to 14 million. Given these projections, greater resources are needed.

Diagnosing a problem is critical. Addressing it once its identified is equally important. The development of new diagnostic tools makes it essential that we prioritize care and support until a cure is found.

Charles J. Fuschillo Jr.New YorkThe writer is president and chief executive of the Alzheimers Foundation of America.

To the Editor:

As an individual with a family history of Alzheimers, I understand the conflicts involved in assessing whether we want to know our risks of getting the disease. I took part in Dr. Jason Karlawishs study of patients responses to the news of amyloid levels because I wanted to be able to plan for my future.

Receiving the news that there was no amyloid in my brain provided relief beyond expression. If the results had been different, however, I would have accepted them with the knowledge that I could plan for my ultimate demise in a way that would work for me and be helpful to my loved ones.

Alan N. FrankelBryn Mawr, Pa.

To the Editor:

Happily Married for 60 Years. Then Alzheimers. And a Gun. (front page, Dec. 29) was devastating. It reinforced the reality that too few people realize there are humane and legal ways to reduce needless suffering, even for somebody with dementia.

All mentally competent adults have the right to document that they want to forgo medical treatments if they get dementia. Their designated health care proxy can then carry out their wishes, significantly shortening the time they endure the most debilitating stages of dementia.

If you are a mentally competent adult, you can create a dementia directive and attach it to your advance directive.

Kim CallinanWashingtonThe writer is president and chief executive of Compassion & Choices.

To the Editor:

I read with sadness and more than a bit of dismay the disturbing portrait of a loving husband caring for his wife afflicted with Alzheimers disease. The burdens on caregivers of people living with dementia are well documented: depression, social isolation, worsening physical health and, in some cases, resistance to accepting help.

There is much we can do to relieve this burden for such families. I wish the article had referred to the exceptional work that well-informed physicians, nurses, social workers and mental health specialists do each and every day to identify and support families that are having an especially difficult time coping with the demands of dementia caregiving.

It is tragic that this family did not benefit from more effective professional dementia support interventions, which must be made available in every community, for every family in need.

William E. ReichmanMilwaukeeThe writer, a physician, is president of the International Psychogeriatric Association.

To the Editor:

Few Americans are lucky enough to have long-term care insurance. We expect spouses to provide care at home and assume that will be enough. Then we act surprised when someone, in complete desperation, resorts to murder-suicide.

I cared for my wife, who had multiple sclerosis, for 50 years until her death. Many of those years were wonderful and productive. But when her M.S. became progressive, our health care system provided almost no long-term care at all. Care was provided by me, by home health aides who were paid privately and by some family members who were kind enough to provide relief.

The aides earned a median income of about $22,000 a year. The lowest paid people in the medical field are the ones who provide care for the chronically ill and the dying.

A support group can help. I belonged to the Well Spouse Association, a national nonprofit support group for the spouses/partners of the chronically ill or disabled. They provided meetings, respite and other services, which helped me to keep going and prevented me from becoming desperate.

Bob MastroCherry Hill, N.J.

To the Editor:

Your article doesnt point out the troubling fact that domestic violence homicides and familicides (including murder-suicides) are on the rise in the United States, despite overall declines in homicide rates.

The article portrays Richard Shaver as a doting husband driven to desperation, but familicide is the ultimate desperate expression of partners (usually male) trying to maintain power and control over their family members.

It is troubling to me that your article does not draw more attention to this epidemic of an extreme form of domestic violence.

Lior MillerSilver Spring, Md.

More:
The Many Ways of Coping With Alzheimers - The New York Times