The office of the Musicians’ Assistance Program is your one-stop shop for musicians’ health. We offer counseling – both one-on-one and in groups – as well as information on all kinds of social services, including health insurance, housing, food stamps and more. All services are free to Local 802 members. Contact us at MAP@Local802afm.org or (212) 397-4802

When someone you love develops Alzheimer’s or dementia

The realization that your partner, parent or loved one is developing dementia or Alzheimer’s is painful. It can be difficult to talk about due to stigma or embarrassment. There are also a great deal of emotions for everyone involved. Here in the MAP office, we get many calls from those who have family members or friends with dementia and are totally overwhelmed about how to talk to them about it. We also get inquiries about how to navigate the maze of health care decisions relating to dementia. This month, we’re going to discuss some facts about the disease, give you some tips on what to do if you suspect someone you love might be developing dementia, and talk about the most empowering part of help, which is taking care of yourself.

How many people suffer from it?

As people’s lifespans increase, the rate of dementia diagnosis continues to rise. In 2013, 5.2 million Americans had Alzheimer’s. Most are over the age of 65. As we all continue to live longer, the rates are expected to increase to 7 million in the next 10 years. Alzheimer’s is the sixth leading cause of death in the U.S. but it’s the only illness in the top 10 causes of death that we can’t cure, prevent, or even slow. One in three seniors die from Alzheimer’s or a related dementia. The costs to caregivers – both emotionally and physically – are great. Most caretaking is done by unpaid caregivers (i.e. family and friends). Not surprisingly, one in three caregivers experience depression.

What does it mean to have dementia?

Dementia is a general term to describe a series of symptoms that involve deteriorating mental ability in daily life. Alzheimer’s is a specific type of dementia and is the most common. It is not a normal part of aging. Alzheimer’s causes problems with memory, thinking and behavior. The symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. Dementia by itself can be caused by other medical problems, like a stroke. Just having memory problems does not mean you have dementia. There are medical conditions such as menopause, anxiety, thyroid issues, or just extreme stress that can cause you to forget where you left your keys or have temporary short-term memory issues. Minor forgetfulness is also a normal part of aging. As with any health-related issue, if you or someone you love is having a lot of memory problems, the first step is to see a doctor for an evaluation.

How does it help to have a diagnosis if there’s no cure?

Mostly the advantage to finding out sooner is time. Families have time to process and time to plan for care. There is more time to identify a guardian and health care proxy, get finances in order, and – most importantly – allow the individual to have a voice in the kind of life he or she would like to have, including end-of-life care.

On an emotional level, there is an enormous amount of loss to be processed. For the individual, it means facing one’s mortality and having to adjust to the gradual loss of independence and facility. Due to memory loss and a greater need for dependency, relationships change and the family has to get ready for a transition of financial assets. For musicians who are suffering dementia, it can be a painful process to lose the ability to work. The fierce independent spirit that many musicians prize and value must be transformed. Allowing others to help you can be an incredible challenge! For families and friends, it’s painful to lose who their loved one once was and figuring out how best to connect with him or her now.

How to talk to someone with dementia

Friends and families often struggle with how to talk to their loved one about the disease. Communication with a person with more advanced dementia requires patience, understanding and good listening skills. Everyone’s individual struggles are different, but usually people with dementia start having difficulty coming up with words, lose their train of thought, and may even revert to their native language (if English isn’t their first language). Take a supportive approach, speak clearly, and try to avoid criticizing. You must focus on guiding and actively listening to feelings without too much pressure at once. Read more communication tips at www.alz.org.

The two most important tools

In light of the all the major challenges for both musicians diagnosed with a form of dementia and their families, the two most important tools to have are support and education. It’s a major undertaking to navigate the health care system, the legal and financial responsibilities, and the changes in relationships brought on by the disease. The Alzheimer’s Association (www.alz.org) is a great resource to go to for the latest information on getting help, including potential treatments, advocacy, finding providers in your area, and other important resources.

It’s highly recommended that caregivers seek help for themselves, as whatever emotional reserve you normally have will need to be replenished. Here in the MAP office, we can meet with you one-on-one to help you process emotions or connect you with the financial, legal or health resources that you and your loved ones need.

Here’s one example: we can refer your loved one with dementia to an assisted living facility operated by the Actors Fund, specifically for musicians and other artists. It’s called the Lillian Booth home. Ask us about it!

We can also help you and your loved ones come up with a specific plan based on your needs and financial resources.

You’re not alone

If you or someone you care about is facing dementia, we encourage you to reach out. The Musicians’ Assistance Program is open Monday, Wednesday and Friday from 9:30 to 5. Services are free to Local 802 members and their families. Give us a call at (212) 397-4802. Sometimes a friendly ear can make all the difference.