Recommendations for Caregivers by Caregivers
The Youngtimers Guide to Caregivers
Welcome. We’re so glad you’re here. Here at Youngtimers, we recognize that a caregiving journey is as unique as the two individuals involved. Our goal with this section is to provide resources and also spark some questions together.
The following is a list of resources organized around seven caregiving strategies inspired by conversations with caregivers in our community! This guide seeks to offer guidance and support to those facing the challenges of caregiving for an individual with early onset familial Alzheimer’s disease (EOFAD).
Unfortunately, there are no easy answers to this very complex disorder, but know that uncertainty, irritation, fatigue, love, humor, confusion, anxiety, isolation are all common emotions felt by the caregiver and person receiving care during this time. So in addition to reading this guide, we also recommend that you find personal support, either through friends, family, or the Youngtimers support group.
How can I provide the best care to my loved one with Alzheimer's?
Do this right away. Make sure that you have your wills, powers of attorney for health, and finances done. It is much easier to do this while your loved one is still legally considered “competent.” Consult an attorney who is an expert in aging and disability law. It might be the most important thing you can do to take care of yourself and your loved one in the future. Not sure where to start? Check out advice from a fellow caregiver: Dan's Story - Considerations for Legal and Financial Planning
Figure 1: Advanced legal and financial planning for caregivers and individuals living with Alzheimer's disease. For more information and resources: click here.
Strategy One Get Your Legal Affairs in Order
We know you may have many concerns about how to save/pay for long-term care, what insurances you should purchase, how to hold onto your loved ones’ retirement and/or apply for disability status. This section of the website here is dedicated to all these questions.
Strategy Two Get Your Finances in Order
We also know that the early onset familial Alzheimer's disease experience can be unique, that’s why we have support groups that work to support you where you’re at. Contact us here to join our monthly virtual Youngtimers Caregiver support group. You can also join the DIAD Facebook group that includes both at-risk individuals and caregivers.
Strategy Three Find Other People Like You
What food do you both like? We often hear from Alzheimer's specialists that "what is good for the heart is good for the brain." Studies have shown that incorporating healthy foods can even help slow cognitive decline, including foods in the Mediterranean, DASH or MIND diets - leafy green vegetables, whole grains, fresh fruit, fish, beans, nuts, and olive oil. Here’s a quick, healthy recipé, that helps promote a healthy brain and overall physical health from certified Natural Chef Alicia Brasch.
What music do you both like? Music can be an especially powerful tool to decrease anxiety and stimulate the brain. Music Therapist Elizabeth Coombes recommends playlists to reduce anxiety in her article: Anxiety: a playlist to calm the mind from a music therapist available here.
Two albums she recommends include:
Tunisian composer and oud player Anouar Ibrahem, particularly his album: The Astounding Eyes of Rita, available here on Spotify.
British composer Brian Eno’s Ambient 1/Music for Airports, available here on Spotify.
What are triggers (e.g., situations that bring about a behavioral or emotional crisis moment) for your loved one and how can you work to avoid them?
This article here from the National Institute on Aging can particularly help with changing communication styles. For example,
Other people in our community have shared the following advice
Try sitting below eye level when engaging with your loved one in order to not come across as threatening.
Follow their curiosities, even and especially when those curiosities may seem off the wall to you. For more arts based interventions and the use of “Yes And” see work with TimeSlips below.
Offer your loved one a sense of control/choice. For example, if they need to change their clothes, offer two outfits and ask what outfit they would prefer to put on today.
One community member highlighted the importance of establishing boundaries on communication preferences before they were symptomatic to find agreed upon ways of communicating. For example, they asked their spouse/caregiver to never say to them "You've already told me this story before."
How can you integrate exercise into your routine?
Especially with Alzheimer’s disease, it’s essential to keep up exercise to retain mobility and cognitive function as long as possible. (See article here for adapting activities). There are so many resources out there!
Ask yourself: What puts your loved one in their happy place?
This might take some trial and error and will almost certainly change over time.
One caregiver put it this way: “If you see joy, you know you’re doing the right thing.”
Strategy Four Find a Routine that Serves You Both
Timeslips is an organization founded by MacArthur genius Anne Basting that explores how to creatively connect to people living with Alzheimer’s and dementia right in their own living rooms. You can learn more about their friends and family resources including a special resource called: “engagement parties.”
Engagement Parties are structured gatherings of friends and family to promote play and connection with folks with dementia through artful prompts and Beautiful Questions on colorful cards. These parties are FREE and entirely accessible within your own home with the help of Timeslips’ free PDF instructions at their website here.
You can also purchase a Creative Care Imagination Kit on Amazon. The kit (from their own description): “sparks conversation and encourages active listening, allowing all ages to freely share ideas and stories without worrying about getting the details ‘correct.’”
Timeslips works to produce a Creative Community of Care. What’s this? Learn more about a recent project with Timeslips in Arizona.
Out and About
Organizations have been gathering nationally and internationally to provide creative strategies to connect with people living with memory loss outside the home.
One key resource includes Memory Cafés: a café or public space that is designed specifically for people with memory loss to connect to one another.
Check out the Memory Cafe Directory to find one near you or work to start your own!
For advice check out: The Alzheimer's and Memory Café: How to Start and Succeed with Your Own Café, by Phd Jytte Fogh Lokvig.
Or Susan McFadden’s book: Dementia Friendly Communities with resources for building reciprocal relationships with people with dementia
Fox Valley Memory Project in Menasha, Wisconsin, which is an organization that believes in dementia-friendly communities and has founded 12 memory cafés so far.
Percolator Memory Café: An outbranch of Jewish Children and Family services in Massachusetts. Percolator hosts an alliance of people who are running memory cafés all over the world!
Creating interactions through art and culture
Arts in Mind in New York City, New York, which from their website is: “a not-for-profit organization committed to improving quality of life for all people living with Alzheimer’s disease and other dementias through engagement with art. We partner with museums to provide meaningful art-centered activities that create positive emotional and cognitive experiences, enhance verbal and non-verbal communication, reduce isolation and build community.”
Momentia: is an organization in Puget Sound in Washington state. Momentia creates gatherings in arts/cultural institutions, bars, gardens that support people with dementia. They have classes too through arts and recreation that look at neurodiversity at different ages. It’s volunteer led, like homeschooling but for caregiving and about staying active, creative, and connected.
Opening Minds Through Art: is based at Scripps Gerontology Center at Miami University in Ohio. This organization invites agency and art making for those with dementia and is intergenerational. The organization partners artists with dementia with volunteers to make visual art together.
Artz Philadelphia: Artz Philadelphia, from their own website is: “dedicated to enhancing the quality of life and well-being of people living with dementia and their care partners through joyful interactions around arts and culture.” They especially focus on visual art practices working with people with dementia/memory loss.
Creative Aging Classes
There are many creative aging classes out in the world! A google search for creative aging and your city is a good place to start but here are some flagship programs to learn more about different possibilities.
The Mesa Arts Center Creative Aging program (including Arts in Mind) in Mesa, Arizona.
This packet of best practices for Creative Aging was put together by The National Guild of Community Schools of the Arts, the National Center for Creative Aging, and the New Jersey Performing Arts Center and published in 2007.
Crowdsourced strategies for navigating the world with a loved one with dementia
Make a button for your loved one that says: “I have Alzheimer’s, please be kind” to wear while they’re out in the world. Others have used a business card to keep in their wallet, that says: “Please be patient, the person I am with has dementia.” The card can be brought out when needed.
Find creative ways to remind your loved one the “why” of your shared activity. One community member found putting a post-it on her loved ones’ knee while she was in the kitchen with the words: “I’m in the kitchen and you’re watching T.V.” helped the loved one settle into the activity.
This same community member encouraged their partner to go for a walk but kept the “find phone app” open on her iPhone so she could track where they were going.
Strategy Five Spend Quality Time Inside and Outside the Home
Remember: “They are the love of my life and they are still in there.”
Learn and educate yourself about what’s going on with the disease. Work to find radical empathy with your loved one’s lived experience.
How to differentiate what’s the person and what’s the disease?
Here’s a good article to begin exploring this difference that explores the 7 stages of Alzheimer’s disease: https://www.pennmedicine.org/updates/blogs/neuroscience-blog/2019/november/stages-of-alzheimers.
Strategy Seven Education About Lived Experience of Disease
Strategy Six Practices of Self-Care
“Remember, what makes you happy? Don’t sacrifice those things. Remember to engage in practices that help relax the mind.”
One community member (who is positive for the mutation) shared the following advice - which we believe is helpful for both the person living with an Alzheimer's diagnosis and their caregiver:
A Holistic Approach
In both nursing and pastoral care I have learned to approach things holistically. We are unique beings created with our own unique personalities…
By 'holistic approach' I am referring to all aspects of your being that you will 'care' for as you approach this or any life process. The holistic approach is centered on Self Care. The aspects that make this 'self care' holistic are: (1) your physical being (2) your mental and intellectual being (3) your emotional being (4) your social being and (5) your spiritual being...
May I suggest you start by making yourself a chart (you can do this together with your spouse or other support person, realizing that you are both unique and may have differences in each area). Be sure to share them with one another. This form of exercise focuses on your "social" well-being. None of us are an island, we are social beings and we need one another. It is very important in your holistic approach to well-being to remember that you absolutely need the support of others around you. A first step in identifying your well being could be to identify the members of your support group (the people closest to you, who will help you through this process). If you need additional support, let your primary care physician know this and begin to seek out people to help you in this time of your life. This will be equally as important for the caregiver as well as those bearing the diagnosis of Alzheimer's.
This evaluation is something I learned in a pastoral education setting and found very beneficial. It uses a circle divided into the five pie shaped areas listed above. You will take a pencil and lightly shade in each pie shaped wedge in accordance with how 'satisfied' you are with that area of your life at this time. For example, if you are looking at your "physical" well-being and feel like this is an area you are very satisfied with at this time, you might shade in 80% or 90% of that wedge. Be sure to jot some notes either in the wedge or on another sheet of paper. What is it that you find satisfying? I might note, "I am 90% satisfied with my physical well-being at this time. I am a good weight for my height, I eat healthy, balanced meals and I exercise regularly. I could improve my eating habits and be a little more consistent in exercising." Or, my wedge for physical well-being might have only 25% or my pie shaped wedge shaded in. And I might write, "I need to come up with a regular exercise plan as my exercising at present is inconsistent, and I could stand to lose about 10 pounds. I could also work on cutting sweets out of my diet."
Figure 2: A pie chart displaying the five different elements of a person's well-being.
After you have gone through each of your wedges and made your lists of what you are satisfied or dissatisfied with, you are ready to take another sheet of paper and list specific suggestions for change. You need to consider each area for how motivated you are to make those changes, and seek support for your plans to change from your support groups. A lack of motivation, or apathy can be a problem with Alzheimer's. Therefore, sometimes we need to focus on one area that we feel most motivated in so that we can see a change. Or we need to seek motivation from our support group. Caregivers, please note here, that constant nagging IS NOT a source of motivation. Here is an example of an 'encouraging' sentence my husband might use with me. "Wow honey, it's a beautiful day outside! I think I'll go for a little bike ride (or walk in the park). It would be so much more enjoyable if you came with me. How does that sound? I know you say you always feel better after you get out and do something. How 'bout it?" A nagging statement would be, "You need to exercise today!"
Now you have done an evaluation and you see areas you are currently satisfied with and areas you may be motivated to change in. Good for you! You are on the road toward improving your "self care". Refer to your list regularly to assess how you are doing in your 'self care', or check on other ideas for improvement you may come up with. Keep working at taking care of yourself!
Here are other self-care practices recommended by caregivers
Book Clubs (many, your local public library is a good place to start)
Sudoku (some available here).
Word Searches for Encyclopedia Britannica (available here).
Crosswords from Encyclopedia Britannica (available here).
Meditation and Mindfulness
Dharmaseed.org (many guided talks and meditation, Buddhist Vipassana)
Dr. Kristin Neff and self-compassion (secular, specific meditations for caregivers): https://self-compassion.org/category/exercises/#guided-meditations
Music (many, see above for specific playlists)
What resources do you need as a Caregiver?
We want to hear from you. Reach out at: firstname.lastname@example.org.