Health and Wellness

What's next after a dementia diagnosis

Little comfort comes from hearing that your mom or dad is suffering from a form of dementia, but there’s plenty that adult children can do to help support parents and preserve their independence and quality of life.

Image for Conversations Article What's next after dementia diagnosis

1. Understand the diagnosis

“I can’t tell you how many times someone is told they have dementia and they come to us and say it’s Alzheimer’s,” says Palmer. In fact, Alzheimer’s is one of many dementias. “Ask the doctor what does the diagnosis mean? Find out if you can get a more definitive answer on the kind of dementia.” Knowing the type — from Lewy body dementia to vascular dementia — might tell you about the pattern of decline as the disease progresses. Palmer says, “Not everyone goes through the same stages but you may be better able to plan and prepare your expectations,” says Palmer.

2. Create a health folder

Store all information related to the diagnosis in one folder. List doctors and their contact info. Add a notebook to record questions and answers. Will more testing take place? Which tests and what for? What other professionals might be involved? Who will be the primary care provider? Note the dates of doctors’ visits and ask how often your loved one will be monitored. Will each doctor initiate bookings or does your mother or father need to call? Update the file and notebook at every appointment.

3. Play a supporting role

While people with dementia may be in denial and lack capacity, they are still in charge of their care. They will be receiving calls and voicemails from the doctor, even if they deliberately or accidentally miss these appointments. “It can be challenging for the adult child: you may never have all the information and the doctor doesn’t have to share it with you,” says Palmer.

4. Take stock of strengths and weaknesses

Palmer recommends documenting your loved one’s skills. “You can start to create increased independence at home simply by having an overt and concrete approach to identifying and scheduling around strengths and weaknesses,” says Palmer. If Mom forgets her medications, what is she really good at remembering and how can we tap into that to get her to remember her meds? Support her independence by developing simplified, strict schedules she can follow, such as a calendar on the fridge reminding her to shower every Wednesday and Saturday.

5. Preserve what's important

What does your Dad value? Without a driver’s license, he can no longer get out to dinner with the guys every Tuesday. Can you make it a priority to drive him each week? “If you push aside those things a parent values, you’ll notice a faster decline in cognitive capacity. Work together with your loved one and other family members to help them maintain as much choice, freedom and independence as possible.”

6. Have those tough conversations

Long before a parent loses capacity, discuss his or her wishes and directives for power of attorney for finance and personal care. Find out their vision for retirement living. “Start the conversation because it may take a year or two to get their head around leaving their home,” says Palmer. “Eventually bring it up again, look at what’s available, go on a tour, discuss the advantages of no longer having to cook and shop and do housekeeping. When it’s necessary to make a move, they’ve been part of the decision-making.”

Dr. Heather Palmer is a cognitive aging and dementia specialist with more than 30 years of clinical and scientific experience. She focuses on helping individuals improve the way they think, feel and function. Heather is the National Director of Cognitive Well-Being for Amica Mature Lifestyles. She is developing cognitive well-being programs for Amica with a heightened focus on Memory Care and Assisted Living.

Find out how residents are enjoying great amenities, activities, flexible dining and personalized service at Amica residences. Book a personal visit today.