The value of early dementia diagnosis

This is the second post in a series on dementia. Read the first one: When you see changes and worry about dementia

By Heather Costello, MSW, LICSW, CDP

Many of the caregivers I talk with feel like there’s no point getting a formal medical diagnosis for Alzheimer’s disease or another dementia, because there isn’t a cure. But there’s so much to be gained by having a medical evaluation and discovering the specific reason for your loved one’s symptoms. Here are five of the reasons I always advise talking with a doctor.

1. The diagnosis may surprise you.

First of all, the physical and cognitive changes you’re seeing may not be from dementia but from something that is preventable or treatable. For example, side effects of certain drugs can be mistaken for dementia: antidepressants, antihistamines, antipsychotics, antispasmodics and incontinence medication. Another factor can be mild-to-moderate hearing loss, which “can inflate the appearance of cognitive decline in the older adult,” according to a study published in Aging Health in 2016.

Your loved one’s doctor may do tests to find out if another condition, such as one of those below, could be causing the dementia-like symptoms:

• Delirium
• Infection
• Head trauma
• Use or withdrawal from alcohol or drugs
• Kidney or liver disease
• Heart or lung disorders
• Hormone imbalance
• Cancer
• After-effects of anesthesia

So let your loved one know that you want to make sure they’re okay, that you’re worried about them, and that their symptoms may be due to something treatable. The cause isn’t necessarily Alzheimer’s disease or other dementia, and if it is, it’s important to know that as well.

2. It can help you plan for future care.

People who do receive a diagnosis during the early stages of dementia may be able to receive treatments that can slow the effects of the disease. Medication isn’t a cure, but it can improve quality of life for a finite period of time.

Those who have a diagnosis also have the opportunity to be involved in making a plan for their future care. They can have frank conversations about how they want to live the rest of their lives, inform caregivers and friends of the activities they want to continue, and make decisions about what they want for end-of-life care. For example, do they want to be given CPR, a feeding tube, or artificial hydration in the late stages of their disease? The Conversation Project offers free online resources to help you start a discussion and find out what matters most to your loved one.

We often think of these conversations as a chance for the person who is ill to express preferences and wishes, and they definitely are. But they’re also for you. You’ll need this information to help guide your decision making when your loved one can no longer express their wishes and make decisions independently. And there are essential documents to formalize caregiving arrangements.

3. Your loved one can be part of the solution.

For someone with a dementia diagnosis, there is the possibility of participating in clinical trials. These are tests of new treatments and drugs that are being designed to prevent, detect or treat dementia. This could give your loved one the opportunity to be part of the ongoing research into finding the causes, treatments and ultimately a cure for dementia.

The Alzheimer’s Association has current information about clinical trials for Alzheimer’s disease and other dementias. Clinical trials are available for people at different stages of the disease. A person living with dementia may be able to start participating in a trial even if they’re already in a later stage of the disease.

4. Discussion now helps guide future treatment and care.

After a diagnosis of dementia, it’s important for your loved one to have the chance to have as much control of the situation as possible. I believe strongly that everyone, including people living with dementia, has the right to make their own decisions and should be supported in doing so whenever possible.

When someone is diagnosed with dementia, it’s a good time to make decisions about—and preparations for—the future, because symptoms will increase as the disease progresses. The conversations you can have at this stage may not be possible later.

5. With understanding comes compassion

If a visit to the doctor does result in your loved one being diagnosed with dementia, you’ll have better insight into what has been going on. You may find it’s easier to be patient with their forgetfulness, confusion, frustration or anger when you know there’s a concrete reason for it.

You can start to consider strategies for making your interactions more positive. For example, if you provide care regularly, you may want to make a daily plan with your loved one’s strengths, routines and stresses in mind. Think about how caregiving can change relationships and how you can influence the way yours evolves.

When you have the knowledge, you can better prepare for the care your loved one will need and for what you need to know as a caregiver.

Heather Costello is a memory specialist and Behavioral Health Case Manager for Fallon Health.