Caregiver Connection
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After a diagnosis of dementia

Posted 07/17/2017 by Fallon Health

By Gerald Gleich, M.D.

It’s difficult to hear that your loved one has been diagnosed with dementia. It brings many emotions to the surface for your loved one, family, and friends.

Fear, sadness, anger, guilt and other emotions may be expressed—or hidden away for the time being. There could even be some relief that the symptoms have an explanation.


Next steps after diagnosis

There are several important steps to take after your loved one's medical providers have diagnosed dementia:

  • Tell others about the diagnosis—even if it’s difficult. Your loved one may have specific ideas about who to tell and when they’d prefer to reveal the news. Reactions from those receiving the news can vary, especially since there is still some stigma that accompanies the diagnosis. Some people will have difficulty dealing with it and may withdraw. Others will respond with compassion and offers of help.

  • Look into disability insurance, retirement benefits and other programs offered by your loved one’s employer, if he or she is still working. The timing will be especially important because some of these benefits may be accessed only while your loved one is still employed.

  • Get counseling for yourself and your loved one to help you come to terms with the diagnosis and begin to understand how you can prepare for the future. While dementia progresses gradually, its speed varies depending on the underlying cause and interaction with other medical conditions.


Plan ahead for dementia care and support

If there is a diagnosis of dementia, taking time to prepare in advance can help you and your loved one better cope with what’s ahead. You will likely need support to help maintain the emotional and physical strength to do the job of caregiving. Time spent on your own health is time well spent. If you become ill, you may not be able to care for your loved one.

Consider some of these options after your loved one is diagnosed:  

  • Seek out educational resources and information for caregivers online and in your community. You are not in this alone.

  • Find caregiver support groups, whether online or in-person, to give you a chance to talk with others who are already going through the experience. 

  • Ask medical providers to provide a sense of what to expect based on your loved one’s specific diagnosis.

  • Talk to the elder care professionals at your local Council on Aging. They have a wealth of information to offer you and your loved one. 

  • Visit blogs and websites about dementia and caregiving for another good way to learn.

  • Check out the Alzheimer’s Association website for a helpful starting point to find local, regional and national resources. 


Tips for communication

Before your loved one’s dementia was diagnosed, you may have interpreted the behavior you saw as inattention or disinterest. And it may have made you feel impatient or angry. Maybe you lost your temper and argued with your loved one or even said things that you now regret. 

While you might feel guilty about your past reactions, you’re not alone in having them—many family members and friends of those not-yet-diagnosed with dementia have similar experiences. 

Now that you know there is a medical reason for your loved one’s behavior, you can change your approach and respond with more patience and understanding. Here are some other tips for making communication with your loved one a little easier: 

  • Put memory aid systems in place—set alarms for taking medication at a certain time or use sticky notes as reminders of tasks. 

  • Avoid arguments. As dementia progresses, it affects the ability to think and respond logically. Arguments with people who have dementia are a losing battle—they are unable to respond to logic.

  • Recognize that feelings of fear or stress may cause frustration for your loved one. Try to avoid triggers for fear and stress, and find ways of soothing your loved one when those triggers arise.  

Most importantly, remember that even though your loved one may eventually lose the ability to communicate through spoken words, there are other ways of communicating. Touch. Smell. Sound. Music. Explore the other ways the brain has to communicate and use the strategies that work best for your loved one.

Sometimes doing work around the house or on hobbies, especially quiet repetitive work like gardening or knitting, can be soothing and enjoyable for those with dementia. Taking opportunities to “live in the moment” with your loved one can be a help to both of you. Looking for those moments can help you enjoy your loved one’s company—and help your loved one find some enjoyment as well.

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