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According to Mayo Clinic, “Dementia isn’t a specific disease. Instead, dementia describes a group of symptoms affecting memory, thinking, and social abilities severely enough to interfere with daily functioning,” and this dementia umbrella includes the commonly known Alzheimers. These diseases are degenerative and pervasive, meaning the disease worsens over time. It is a very difficult diagnosis to accept and often marks the beginning of your grief process. Luckily, there are some things you can do.
The tips below come from my experiences and observations working as a caregiver and therapist to individuals diagnosed with forms of dementia. These tips are meant for family members and loved ones of an individual impacted by dementia.
1. Introduce yourself to the team.
If you are the assigned healthcare power of attorney (POA) then your role will become essential upon a dementia diagnosis. This means that you are now the primary point of contact for doctors, staff, therapists, other family members, etc... Introduce yourself to those people. Let them know how they can reach you and what they can expect from you. In regard to doctors and assisted living staff, let them know when you want to receive updates. Weekly? Daily? Also let them know when you are absolutely unavailable, and what constitutes a reason to reach you during those times. Let them know when to call you and when to move ahead without your input. You can be firm with your boundaries and you can enforce them. Doing so does not mean that you love your family member any less.
2. Visit on a schedule.
Keeping your visits to a regular schedule helps alleviate your own guilt and also helps your loved one. In my work with Alzheimer’s patients, almost all of them, even the severely impacted, had an accurate sense of the frequency of their children’s visits. Repetition is huge. The brain has trouble with many functions but is able to feel when things occur in a routine. If you visit once per week, they will start to feel this rhythm and notice when it has changed, albeit subconsciously. Consistency and predictability are key. However, do not visit so frequently that you burn out. Absolutely do not feel obligated to adjust everything in your life in order to visit more than you are emotionally able. Boundaries are good. Someone told me once, “do not sacrifice your own dreams in order to take care of someone else.” Continue to go on vacations, go out and have fun, do things that make you feel good. Keep your life routine as enjoyable as you can.
3. Use music.
Ah, the magic of music. I once worked with a woman who was profoundly impacted by dementia. Her mind played tricks on her constantly, she thought that she was about 60 years younger than she actually was, and at times she could not remember her own name. BUT put a piano in front of her and that woman could PLAY music. Beautiful music... Music FROM MEMORY that she learned decades prior.
Listening to music has a similar effect. I’ve worked with people who know the words to songs that they hadn’t heard in 15, 20, 30 years. People who could not even remember what job they held throughout their adult lives, could still remember the tune of their favorite song. Accurate memories may not come back, but feelings do. Play a wedding song and see how their expression changes. The person may know that they like this song and feel good, but can’t recall why. That is okay. It is the feeling that counts here. This is good for the brain and good for the spirit.
4. Make a family tree.
One of the most impactful experiences I had working with this population, was walking into a nursing home room and seeing a huge, think science-fair poster-board size, family tree hanging on a woman’s wall. Her family took the time to draw this and give it to her. At times she had no memory that it was her own family tree, but with prompting she could start to connect the lines on her own and identify names of her family members. When they visited, they referred to the family tree, saying “I’m this branch, and these are my kids, they’re the leaves here…” I vividly remember seeing this woman’s eyes open so clearly; as if this tree allowed her mind to connect to her family. Add photos to make it even more powerful.
5. Stay positive.
Navigating a dementia diagnosis is HARD. There’s grief, confusion, anger, sadness. etc... Please, feel all of these things as you dissect what this diagnosis means for you, your loved one, and your family. Feel the hard feelings, but leave them at home as much as possible. Keep your visits with your loved one POSITIVE. Bringing your own sadness, anger, grief, and frustration into their altered world may confuse them and leave them feeling lousy themselves.
I worked with a woman for a long while throughout the progression of her dementia. She presented in a very depressed state and most of the statements out of her mouth were negative. Everything was horrible. She always felt horrible. Horrible, horrible, horrible. However, I refused to sit in “horrible” with her. This can be okay for other types of therapy, but for dementia, we are working with the brain more than conscious thoughts, so sitting in ‘horrible’ and validating that too much would likely reinforce it in the brain and potentially keep her stuck there. We need to reinforce positive brain pathways, so I countered her negativity with positivity. I constantly reframed her statements with more realistic, positive ones. I did this repeatedly, every single time I visited her, multiple times per week. Over time, magic happened, and she started to do it herself. I ended up speaking less and less, as she was able to notice her own negativity and adjust her sentences to more positive ones. Soon enough our conversations focused largely on the beautiful flowers outside and her favorite things. Sure, negativity and sadness crept in on occasion, but we were more quickly able to squash it and get back to the good. This may not be possible for every single person, but it’s sure worth a try.
6. Take care of yourself.
Being present during visits with your loved one can be draining. You love them. Yet you are also grieving them. This is a thunderstorm on your soul and you need to take breaks. Plan to do something that feels good right after your visit. Grab coffee with a friend, have a nice meal with your spouse, schedule a therapy session, vent to your sister, take a bath, go for a walk, watch a weird TV show, whatever feels good to YOU.
You know your loved one best. You know your family best. These tips are simply general ideas based on my experiences. Tailor them to fit your unique situation, and add your own ideas. And of course, lean on someone you trust throughout this difficult time. For additional support, find a therapist near you.