In My Opinion: Information on new dementia treatment and role of family caregivers

By D. GRANT CAMPBELL

If you’re caring for a family member who is living with dementia, you’ve probably asked your loved one’s doctor what treatments are available.

Normally, the answer is a depressing one, because medications can only alleviate symptoms for a time. But these are exciting times in medical research, and new treatments are emerging.

Last year, Health Canada approved a new drug called Lecanemab (sold under the brand name Leqembi) for treating Alzheimer’s disease. However, Leqembi treatments cost about $30,000 per year, and are not covered by public health plans.

For many family caregivers, then, deciding whether to opt for new and costly treatments such as Leqembi will trigger some familiar questions that disturb one’s conscience and one’s nightly rest. “Am I willing to pay the price?” “Am I being selfish?” “Am I doing enough?”

I can’t answer those questions for you, but after seeing both my parents through dementia care and writing a book about it, I can at least suggest five questions that you should be prepared to ask, when discussing any medications for treating a loved one’s dementia.

These questions matter for your loved one; they also matter to you, because the implications for your life go far beyond the question of expense.

1.) Does the treatment work for your loved one’s specific kind of dementia? Dementia is caused by a number of different disorders, and the treatment may not work in all cases. If the treatment only works on the plaques caused by Alzheimer’s Disease, for example, it may not work for Lewy Body or vascular dementia.

2.) Does your family member belong to a population that was represented in the clinical trials? If not, you may want the doctor to do more investigation: different ethnic, gender or income groups may react differently from those in the trial. Furthermore, side-effects can vary, and you need to know if your loved one belongs to a group that is particularly vulnerable to those side effects. This may involve additional tests to make sure that the treatment is reasonably safe.

3.) How is the treatment administered? This is crucial for the caregiver to know, particularly if the treatments are time-consuming or logistically complicated. Lequembi, for instance, is typically administered intravenously twice per month, along with regular and frequent MRI scans. As a caregiver, you need to know how upsetting or disruptive a treatment will be to your loved one and to yourself. You also need to know if the facilities for such treatment are available where you live.

4.) At what stage of the dementia does the treatment work? If the drug works at the early stages of dementia, the family member with dementia can actively participate in both the decision and the procedure, and the caregiver’s job is much lighter. Getting someone in the later stages of dementia to cooperate while undergoing complex procedures may well be impossible. Getting your loved one to stay still during an MRI scan, for example, can be a challenge, especially if the machine arouses claustrophobia.

5.) What kind of relief can the family expect through this treatment, and for how long? So far, no one has invented a cure for dementia; the most any of these treatments can provide is to keep the loved one in the early stages for a longer time. In that case, you and your loved one are entitled to ask: in general terms, how long? Does this give the loved one an extra three months? An extra three years?

There’s no reliable and specific answer to that, of course, but at least you should know what the research suggests.

The subjects of the clinical trial for Leqembi, for example, experienced on average 18 additional months of only mild cognitive decline. That may seem all to short for some; for others, on the other hand, it might provide enough of a window for the loved one to make some crucial decisions, empty some of the bucket list, and meet the first great-grandchild.

Whatever answers you receive to these questions, remember: as a family caregiver, you belong at the table.

Your concerns matter, and you owe it to yourself and to your family to participate fully in decisions about your loved one’s welfare.

• D. Grant Campbell is the author of Surviving Dementia Care: the Realities of Caregiving, published by University of Toronto Press.