The Disease for Which There Is No Cure and Not Enough Conversation

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If I simply let the title of this column stand alone, I suspect most readers of Federal Practitioner would fill in the blank with diseases, such as cancer, HIV, or even devastating genetic conditions, just as I would if presented with the statement without explication.

I read the sentence several weeks ago on a website for caregivers of patients with dementia while browsing for quite a different purpose, and it has haunted me ever since. As a consultation psychiatrist who has spent my career as a VA hospitalist, I am well aware of the sad reality of dementia, but against the backdrop of the aging veteran population, the poignancy of the human tragedy overwhelmed me.

Almost every day on the medical and surgical wards of the VA hospital where I have worked for nearly 2 decades, I see an aging veteran population. There are days when the average age of inpatients is pushing 70 years, and there are many patients in their 80s and 90s. The statistics show that my facility is by no means unique in the VA. Data from the American Community Survey Profile of veterans in 2015 indicate that the median age of veterans is 64 years whereas that of nonveterans is 41.1 The survey emphasized that this age factor has a rippling effect on many other demographic parameters, such as disability, income, and employment, all, in turn, impact the epidemiology of health and illness.1

It is not just age that increases the likelihood that a veteran will develop dementia: Research has identified several aspects of military service that raise the risk of being diagnosed with major neurocognitive disorder, the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition designation for dementia. Many families, patients, and even a few health care professionals may not realize that major neurocognitive disorder is the new neuropsychiatric term for dementia.

Also, many health care professionals do not realize that dementia is the sixth leading cause of death in the U.S.2 Traumatic brain injury, posttraumatic stress disorder, and depression are identified as potential contributors to a higher incidence of dementia in service men and women often with onset at an earlier age.3 Given the prevalence of these comorbidities in persons who were in the military, the VA and DoD will face the medical and psychosocial challenges of providing not only clinical treatment, but also a range of social services for military personnel and veterans. Indeed, federal institutions like the GRECC (Geriatric Research Education and Clinical Center) already are engaged in cutting edge research, delivering high-quality medical treatment, and specialized geriatric and dementia care education and support.

Despite these impressive efforts, too often families ask me 2 crucial questions when a patient is already at a moderate or severe stage of the disease: Is there a cure, and will they get better with or without treatment? This lack of knowledge and understanding is by no means confined to federal health care.

A 2015 report from the Alzheimer’s Association found that 45% of patients with Alzheimer disease or their caregivers were not told about the diagnosis by the doctor.2 Doctors reported that they were more likely to have informed the family of a cancer diagnosis at least in part because they felt there were treatments available and in some cases a cure.

Families ask these questions of me and other health care professionals in the hope of finding guidance. Often the veteran has been hospitalized after behavioral disturbances or wandering have made it impossible to care for the loved elder at home. The family is faced with a double blow: learning the patient has an incurable terminal disease and having to make the decision to place a grandmother or father in a nursing facility. Granted this woeful decision may have to be made even when the family has been fully informed at the time of diagnosis, but it is more distressing when the decision is needed immediately based on safety.

Husbands and wives of 50 years or more and adult children, graying themselves, often ask the second question about improvement. Although treatments exist that can help relieve symptoms and slow progression temporarily, the inexorable and tragic course of the wiping away of memory cannot be reversed or halted.

Not surprisingly, practitioners avoid telling patients and families about a dementia diagnosis because those conversations are painful and difficult. However, the news is much less agonizing to hear when there is time to enjoy the good days that remain and to make arrangements for finances and families. For these important reasons, VA emphasizes shared decision making as the cornerstone of geriatric care. Yet there can be no shared decisions without the compassionate and truthful telling about the diagnosis and the prognosis.

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