Recently I’ve been thinking a lot about dementia and how we, as a society, view it. I detect a paradigm shift.

Observing how different groups  discuss dementia, I’ve noticed a split in perspective. It seems determined by whether or not the speaker is, herself, living with the disease.

The difference between the two sides? A shift towards viewing dementia as a progressive, terminal illness rather than as a foregone conclusion.

This is just one in a series of posts on this topic. Today we’ll discuss early-onset forms of dementia.

Dementia is progressive

Essentially, dementia is brain atrophy. It’s a degenerative disease. Why do we sometimes think of it as a normal part of aging? It is not.

Just like others who are terminally ill, those living with the symptoms of dementia deserve to be treated as individuals living with a progressive (meaning it gets worse, not better) illness. The key word is “individuals.” Too often they’re dismissed as “too stressed,” “just getting older,” or “losing it.”

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Dementia is most often thought of as a memory disorder, an illness of the aging mind. . . . But experts in the field say dementia is more accurately defined as fatal brain failure: a terminal disease, like cancer, that physically kills patients, not simply a mental ailment that accompanies older age.

-Catherine Elton
Reframing Dementia as a Terminal Illness
TIME Magazine (10/14/2009)

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In Catherine Elton’s article, Reframing Dementia as a Terminal Illness (excerpted above), Elton interviewed Dr. Greg Sachs (of Indiana University‘s Center for Aging Research). He discusses the study, The Clinical Course of Advanced Dementia,* published in the October 15, 2009 issue of The New England Journal of Medicine. Sachs wrote an accompanying editorial for the journal.

“This is the first large study to show what specialists have been arguing for years. Dementia is a terminal illness, and patients warrant palliative care,” Sachs says.

He echoes the study’s lead author Susan L. Mitchell, M.D., M.P.H., a senior scientist at the  Institute for Aging Research (part of Hebrew SeniorLife, an affiliate of Harvard Medical School in Boston).

“Dementia is a terminal illness,” Mitchell says. ”As the end of life approaches, the pattern in which patients with advanced dementia experience distressing symptoms is similar to patients dying of more commonly recognized terminal conditions, such as cancer.”

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We forget the brain does everything for us — controls the heart, the lungs, the gastrointestinal tract, the metabolism.

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“Our main findings confirmed dementia has high mortality. People in the study didn’t have other devastating things happen to them before they died.”**

“Dementia ends up involving much more than just the brain,” says Dr. Claudia Kawas, professor of neurology at the University of California, Irvine. “We forget the brain does everything for us — controls the heart, the lungs, the gastrointestinal tract, the metabolism.”

Why does that have to do with early-onset dementia?

People diagnosed with dementia must be respected and supported as individuals. To live with symptoms of dementia doesn’t always necessitate immediate, radical life changes. Like those who live with cancer, it is possible for people living with dementia to maintain much of their pre-dementia lives, should they so choose.

Our job as a society is to better understand dementia and enable, not dismiss, those experiencing it.

We need to offer support.

It’s worth noting that, in the US, the A.D.A. (Americans with Disabilities Act) covers dementia. We must make accommodations for those living with the symptoms of dementia just like we  accommodate those who live with other impairments.

What happens when someone’s initially diagnosed?

Some practical considerations:

• Some people may choose to immediately stop working (if they were employed at the time of diagnosis), but it’s not required. Many opt to continue working if the employee’s impairments don’t interfere with her own  and others’ safety and well-being.If the employee wants to continue working but can’t maintain the same role, then she may opt to shift to  another position in the same company.

  Particularly for those with early-onset forms of dementia, one may be diagnosed in her peak “earning years” and not want or need to retire early.

• Both at home and in the workplace, accommodations for dementia could include something as simple as writing down, rather than just speaking, the answer to a question. It might entail limiting distractions or providing a electronic calendar that pops-up reminders.
• As symptoms of dementia worsen, physical and mental abilities will change. But it’s important to allow individuals to do for themselves whatever they’re still capable of managing.For example, if someone can live independently but needs help with meals or personal care, the priority should be on finding help with meals or personal (and not moving the person to a care community).
• It’s vital to start considering finances and “what to do if”s early-on. How to develop a financial and legal care plan from the new alzheimers.gov website has some good tips to get you started. So does About Alzheimer’s Disease: Legal and Financial Planning (in the Alzheimer’s Disease Education and Referral Center, a part of the National Institutes of Health‘s National Institute on Aging).[NOTE: although these resources say "Alzheimer's" in their titles, much of their content applies to most forms of dementia]

Too often we seem to either accuse people who successfully live with dementia of “not really having dementia” or we overstep, attempting to take control of their lives. We should admire and support those who successfully maintain their lifestyles to the best of their abilities. Be sensitive, patient, empathetic.

Seeing dementia as a progressive, terminal illness seems to help us see the person living with symptoms as just that: a person, first and foremost, who is living with symptoms.

Dementia impacts different people differently, and knowing what the end-stage may look like doesn’t dictate the steps along the way to get there. Each individual’s experience is unique and it’s critical that, as the population living with dementia blooms, we, as a society, begin to appreciate that not all dementia is end-stage, and that it’s quite possible to live with the symptoms of dementia for years before they begin to majorly impact a life.

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Sources and Additional Resources

• Reframing Dementia as a Terminal Illness from TIME Magazine. Catherine Elton. (10/14/2009)
• The Clinical Course of Advanced Dementia from The New England Journal of Medicine. Mitchell, Susan L. et al. (10/15/2009)*
• Dementia remains a terminal illness and it is right to invest more in research from The Daily Mail (UK). Julia Manning. (3/26/2012)
  
• http://www.alzheimers.gov

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*The New England Journal of Medicine: The Clinical Course of Advanced Dementia.

Susan L. Mitchell, M.D., M.P.H., Joan M. Teno, M.D., Dan K. Kiely, M.P.H., Michele L. Shaffer, Ph.D., Richard N. Jones, Sc.D., Holly G. Prigerson, Ph.D., Ladislav Volicer, M.D., Ph.D., Jane L. Givens, M.D., M.S.C.E., and Mary Beth Hamel, M.D., M.P.H.

N Engl J Med 2009; 361:1529-1538

October 15, 2009

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** “Patients’ median survival span was 478 days, a figure comparable with that of terminal-cancer patients.”

Reframing Dementia as a Terminal Illness

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