What Geriatricians Tell Family Members After a Dementia Diagnosis

Lisa Fields
Added: 06.24.2022
5 minutes read
When your parent is diagnosed with dementia, you may be unsure what to expect in the immediate and long-term future. A geriatrician – a primary-care physician who received specialized training to treat conditions that affect older adults, such as dementia – may be best positioned to educate you about the journey ahead.

“I will usually sit down with a family – not necessarily the patient – to talk to them about what is dementia, what therapies are potentially available and what are the challenges that are going to occur if the patient lives for many years and succumbs to the disease,” says geriatrician David Hackethorn, MD, an assistant professor of internal medicine at Texas A&M Health Science Center in College Station, Texas. “That’s an hour-long conversation. In my experience, it’s not done by the primary care doctor... Maybe they are not knowledgeable of everything that I talked about. Maybe they don’t have the time to do it.”

There are fewer than 7,000 geriatricians nationwide and more than 6 million Americans with Alzheimer’s disease and dementia. If you don’t have the opportunity to speak with a geriatrician after your parent’s diagnosis, this is what one geriatrician normally tells families of newly diagnosed patients:

Accept the diagnosis

It can be difficult to come to terms with the fact that your parent has been diagnosed with a condition that affects their memory and ability to function independently, but acceptance is necessary.

“One of the first statements I make is that there is no disease-modifying medication for this disease – recently, the FDA approved a drug that was felt to be a disease-modifier, but there was a whole lot of speculation about the process of that approval,” Hackethorn says. “It is going to progress. We’re dealing with, ultimately, a fatal disease, if the patient doesn’t die from something else, and that shapes the whole dialogue.”

Help your parent plan for the future
Before your parent becomes too cognitively impaired, ensure that their wishes for their medical care will be honored once they are unable to advocate for themselves.

“Make sure that there’s a medical power of attorney, that they have signed or developed a living will,” Hackethorn says. “[Have] a discussion about: Would they want... to be resuscitated should they have a cardiac arrest? The other major issue is feeding. Would they want... a feeding tube? Which we do not advocate.”

Expect behavioral issues
Caring for a loved one with dementia is unlike caring for someone with any other disease. Someone who spent much of their life loving and nurturing you may forget you or launch personal attacks against you, which can be very upsetting. 

“The patient can exhibit behaviors that are very bothersome to the caregiver: Actually physically strike out. Use profanity towards. Be resistant to any care... Loss of recognition that a loved one is really related to the patient,” Hackethorn says. “This can be very disconcerting to the family, but they need to be prepared for these behaviors.”

Pay attention to your own mental health
Taking care of a parent with dementia is a stressful, thankless job that may require you to work and socialize less than usual to meet your parent’s needs. Some family caregivers develop depression, so be aware of your mental state and take breaks to revitalize when you need a boost. Depression may arise at any point.

“I’ve seen several times when a patient dies, the loved ones ask themselves, ‘Did I do everything that I possibly could?’ and they then begin to feel regretful that maybe they didn’t,” Hackethorn says. “That can then worsen or precipitate depressive feelings.”

Prepare for a dementia-related death

Some people with dementia die of other causes, but others die of dementia. Witnessing the slow decline can be difficult to watch.

“It’s one of being bed-bound, non-communicative, not eating or drinking,” Hackethorn says. “The inability to take liquids and foods can be very disturbing and upsetting to family members, so you have to explain to them that this is part of the dying process.”