When a loved one receives an Alzheimer’s disease diagnosis, it is life-changing for them and the close people in their life — spouses and partners, children and grandchildren, friends and extended family. The disease changes how you interact with your loved one and how they can interact with you and those around them. While these relationships may change with a diagnosis, they can also grow into a new kind of special connection with patience and understanding. Yes, the diagnosis can be scary and difficult to discuss, but it can also bring family and friends together as a stronger support system.
The Alzheimer’s Caregivers Network asked the caregiving community to share personal experiences and advice for helping family and friends understand and navigate a loved one’s Alzheimer’s disease diagnosis. Read personal experiences and advice directly from caregivers and experts themselves:
Liz O’Donnell, founder of the Working Daughter community for women balancing caregiving and career, offers this advice to friends and extended family members of someone who has Alzheimer’s disease:
“Separate the disease from the person and encourage others to do the same. So reframe ‘Mom is acting aggressive’ to ‘Mom’s Alzheimer’s is making her aggressive.’ Doing this helps reduce the stigma around the disease and helps not to take someone’s actions personally.
Learn to just be with the person you are caring for. Rather than focusing on how your relationship used to be or comparing your interactions now to your interactions in the past, focus on how you are together in the moment. Toward the end of his life, my father didn’t remember I was his daughter, but he knew he enjoyed my company, and I enjoyed his. Our relationship didn’t need to be defined to have good times together.”
Caregiver Heather Sosa notices that people often feel unsure interacting with someone who has dementia. She shares tactics to ease discomfort in these conversations and interactions:
“I try to offer suggestions ahead of time to help, and I keep calm myself. Smiling and helping with sentences that may not make sense or jumbled words makes it easier, or just changing the conversation. We laugh a lot and keep it light. It can be exhausting, but what isn’t with this disease?”
Susan Nilson is the founder of The Cat and Dog House and a caregiver to her mom, who was placed in residential care a year ago. She offers this advice about communicating with a loved one who has dementia:
“It’s essential to understand that communication with someone who has Alzheimer’s disease may not have a rational structure or progression. So you really have to go wherever the conversation takes you and not have any specific expectations. It’s important not to point out if your loved one has forgotten something or got something wrong; this will just confuse or frustrate them because they can’t remember. Instead, just go with the flow wherever the conversation takes you. Even if it doesn’t make sense — it really doesn’t matter.”
Nilson says photos are an excellent way to help a loved one maintain strong connections with friends and family members:
“Creating a photo book full of old photos and happy memories can also help maintain a connection with your loved one. Write or type underneath each photo who is in it, where it was taken, what’s happening in it, and the year (as close as possible). Sometimes your loved one may remember, and sometimes they won’t, but when they suddenly smile at a happy memory or funny picture, it’s worth its weight in gold. Order large printouts of photos of family members from an online print shop and put them up on the wall to help your loved one remember who their important family members are. Make sure you add some text with the person’s name to help them recognize them.”
She adds that every moment of engagement supports a special connection and should be cherished:
“Most of all, try to make them laugh. Do silly things. Mention silly family jokes or something funny someone used to say. I can only imagine how my mom’s spirits lift when I manage to make her smile, and it’s often something she carries with her for many hours afterward. Be aware that you will have good and bad days, and even good and bad moments in the same day. What your loved one has forgotten one day, they may remember at a different time. Don’t give up, and cherish the good moments when you get them.”
Reading can be a great way for family members and friends to navigate their loved one’s Alzheimer’s diagnosis. On an Alzheimer’s Caregivers Network Instagram post, Shar recommended the book “A Caregiver’s Guide to Dementia: An Unintended Journey” by Janet Yagoda Shagam.
“It just gives what to look out for ahead of the game. Everyone will get something different from it depending on their loved one’s needs and characteristics.”
Liz is an Alzheimer’s prevention advocate who passionately helps daughters of people with Alzheimer’s disease turn their fear of developing the disease into power by taking control of their health through tiny actions.
“I just normalize it. I talk to people like people. We are all unique and are worthy of being treated as the amazing human beings we are. Oh, and a lot of patience is needed. If I could turn back the clock with my parents, I would be a lot more patient. As with everything, time passes too quickly.”
She adds that Alzheimer’s disease is scary, and it’s OK to acknowledge that with friends and family:
“It’s scary, and I think it’s ok to agree that it’s scary. The disease causes all kinds of unusual symptoms and behavioral changes that can be more than a little frightening. Also, I just try to think how terrifying it must be to lose one’s brain (literally), which fuels my compassion.”
Jessica Stokes lost her mother to Alzheimer’s disease in January 2022 after a 13-year journey. She chronicles her family’s story in her book, “Seeking Clarity in the Labyrinth, a Daughter’s Journey Through Alzheimer’s.” She shares some analogies from the book that worked well when explaining Alzheimer’s disease to her own children:
“Puzzle pieces: I saw this on an Alz Special on PBS in the early years, and it stuck with me. It is like your loved one’s mind and memories are a puzzle. Sometimes the puzzle pieces get removed or lost. So you can still tell the big picture, but there are gaps or missing pieces. They may not know things like they used to, but they are still there — it is just a little fuzzier.
Snake: When a snake sheds its skin, a new version of it emerges. It is fresh, new, and clean and leaves an exact replica of itself in its discarded papery snake skin. With Alzheimer’s disease and dementia, as a person goes through various stages, it is like shedding skin. Sadly, it is not necessarily a fresh and new version of them. But it is still them, just with a new skin.
Wild Animal/Feral cat: We have a feral cat who does not like us to approach them. But on her terms, she will cuddle and approach us. At times, approaching the topic of mom’s memory loss and the changes happening to her worked better if we let her come to us and approach us with the topic.”
She says that often, younger kids connect very well with people with dementia:
“My 5-year-old nephew was brilliant. He would show mom and encourage her to eat, it was a game and fun for him, and he ‘rewarded’ her with a piece of chocolate. She thought she was helping him, but he was really helping her. Art is a great way for kids to connect, too. Drawing or coloring together. Doing simple art projects.”
Stokes reminds all caregivers not to lose sight of the fact that their loved one is the same person, just a different version of themselves:
“Be present. See your person. We so often think we have ‘lost our person.’ We have lost versions of them. But we owe them the respect to still see them. We owe them the right to keep their integrity. It is so hard to see it. Especially when we are in the middle of it. But we have to strive for this. No one that is diagnosed with Alzheimer’s ‘wants’ it. They would never choose it, yet they are dealing with it.”
Benjamin Surmi, Director of Education and Culture at Koelsch Communities, says It’s important to help friends and family understand that their loved one’s diagnosis does not overshadow them as an individual:
“Dementia is a chronic disease, and lots of people live with a chronic disease. Help family and friends understand that the person they care about needs them to continue loving and spending time with them. They may need to repeat themselves or listen to repeated stories, and they may need to try to understand how that person perceives what’s going around them. But, the loved one living with Alzheimer’s needs us to be ourselves and not treat them as a different person.”
When helping children understand Alzheimer’s disease, Surmi suggests several new books written specifically for kids and young adults — the nonprofit ALZAuthors provides a comprehensive list.
“In addition to sharing these books with children, it’s important they understand that you are there to listen to them without judgment and answer questions honestly about their loved one living with Alzheimer’s. Encourage children to express their feelings and remind them that you are always available to answer their questions or concerns.”
He adds that several resources are available for caregivers, friends, and family:
“Some are educational, others are inspiring, and many offer practical ways to strengthen relationships with loved ones living with memory loss. For example, at Koelsch Communities, we encourage families to read any of the best-selling books on this topic, i.e., ‘Creating Moments of Joy Along the Alzheimer’s Journey: A Guide for Families and Caregivers,’ or ‘The 36 Hour Day: A Family Guide to Caring for People who have Alzheimer’s Disease, Related Dementias, and Memory Loss.’”