Community Views: Advice for Those Newly Diagnosed with Alzheimer's
Last updated: May 2023
Learning that you have Alzheimer's disease may lead to anxiety, worry, and fear. After all, it is hard to know what to do next. It can be scary and overwhelming to consider your future with this diagnosis, but as several community members suggested, all you have to do is take it 1 day at a time.
To learn more about how our community members learned to adjust to life with this diagnosis, we reached out to followers of our Facebook page and asked: "What advice would you give someone just diagnosed with Alzheimer's?"
More than 70 community members responded, and here is what was shared.
"Keep everyone informed."
It is a good idea to fill people in about what you are dealing with, however you feel comfortable sharing. Telling family members and even neighbors helps empower your community to be allies for you. Thinking ahead, it cannot hurt to give family, friends, and neighbors a few phone numbers of people to call in case of an emergency. The more prepared your community is, the more likely it is that they will be able to help you.
"If possible, have a family meeting with as many of your immediate family members as possible."
"Keep everyone informed, including close friends and neighbors."
"Make plans for the future."
It is never a bad idea to make plans for the future. When it comes to Alzheimer's, this could mean discussing with your partner or family what your care may look like. It can be an uncomfortable conversation, but it is never too soon to start talking about your wishes in the event that your care becomes too challenging for your spouse or family members.
As difficult as these conversations may be, it is always easier to get the ball rolling long before you or they are forced into making these decisions.
"Prepare ahead of time."
"Make plans for the future. Where will you live? Who will care for you? Or does the family think a facility that cares for Alzheimer's persons is better?”
"Get all legal papers in order."
This is 1 of the harder tasks to face, but it could be 1 of the most helpful down the line. It is a good idea to prepare legal documents as soon as you can. The list of documents to consider addressing includes:
- Power of attorney and healthcare/medical power of attorney
- Standard will, living will, and conservatorship
For example, naming a medical power of attorney means that the person with Alzheimer's will choose someone to make healthcare decisions for them when they are no longer able to. A power of attorney document will also ask the person with Alzheimer's, referred to as the principal, to name someone to make financial decisions for them. The living will document designates how someone who is mentally or physically incapacitated will want to be treated.
"Appoint a power of attorney."
"Get all legal papers in order. If past consent, seek conservatorship."
"Prepare. Get all legal documents, such as will and power of attorney – for both health and finances – up to date."
"Your life is not over."
This very well may be the scariest thing you will ever face, but, as several community members shared, it does not mean your life is over. You will have many good days ahead.
Many people with Alzheimer's also suggested keeping crosswords, sudoku, puzzles, art projects, and craft materials for other hobbies close at hand to help keep your mind engaged. Art projects, such as painting, can be especially soothing and can also help people with Alzheimer's stay connected to memories.
"Your life is not over."
"Keep a journal. Play mind games, such as crosswords. Exercise. Do all the things you love to do."
Thank you to everyone who shared their experiences for this story. We are grateful to the community for your willingness to share and offer loving advice.
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