Alzheimer’s Change Champions: Advice From Care Partners
The importance of care partners cannot be overstated when it comes to Alzheimer’s Disease.? While patients can maintain some aspects of independence after an Alzheimer’s diagnosis, establishing a support system is important for navigating through uncertainty as the disease progresses and for maintaining quality of life.
PicnicHealth is fortunate to have many engaged care partners willing to share their experiences while supporting a loved one with Alzheimer’s Disease.? We call them Change Champions because of the extraordinary work they do to educate and raise awareness on behalf of the Alzheimer’s disease community.? We asked what advice they could share about taking on the role of care partner.? Read below for advice from 5 of our Change Champions.
Donna Marentay spoke about acknowledging the long and unpredictable nature of the disease.? She emphasized that changes and adaptations can happen over time, coinciding with how the disease progresses for the patient and their individual needs.
“Life should not stop upon an Alzheimer's diagnosis.? Changes which come about from the disease process come on slowly, and changes we make in the life a person has known should equal that pace, not be put in place right from the start.? Many times unnecessary restrictions cause frustration and anger, and we blame it on their dementia.? Be adaptable and accepting.? We cannot yet change this disease but we can change our approach to care.”
Jennifer Fink, creator and host of the Fading Memories Podcast, had two pieces of advice for care partners beginning their care partner journey.? Avoid making promises such as, “I’d never take away your keys Mom!” or “Of course you can stay in your home, I would never dream of putting you in a home!”? These are statements that may or may not end up true and likely Mom will eventually need to give up her spot behind the wheel.? Jennifer’s second piece of advice was to establish a care team early for both the care partner and the loved one with Alzheimer’s Disease.?
“For people who are at the beginning stage of caregiving there are two important messages. First, do not make any promises for the future. You do not know how this disease will affect your loved one, what your abilities will be, both physical and mental, so making promises you can’t keep will only lead to guilt feelings.? Second, put a care team in place early on. I have both an article and a podcast episode that talk about how to make this happen. It’s a message I preach regularly.”
To learn more about Jennifer and access a ton of helpful resources, visit her website Fading Memories.
Mary S. Daniel shared about the importance of having upfront and honest conversations.? Similar to being honest about needing to give up driving, having down to earth conversations about preferences during life and after, when the loved one is able to express them, will relieve a lot of the pressure faced by care partners faced with making tough decisions.?
“Live life to the fullest every day, discuss end-of-life care decisions so there is no doubt that everyone knows what the patient’s wishes are. Find a support group, this is easier with other people going through the same thing. If you don’t see it and haven’t lived it you have no idea how sad it really is.”
How the disease will progress for any individual patient is largely unknown.? However, Change Champion Ty Lewis had very practical advice about moving forward following a diagnosis.? She shared:
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“This disease is not just about someone losing their memory. It’s more than that. One piece of advice that I would give someone as a caregiver is to accept the diagnosis and continue to live life!”
Finally, Patti LaFleur, M. ED, CDP acknowledged the importance of having a solid support group. Alzheimer’s Disease care partners have a big role and it is important to be supported to give the best care.
“Find support. Find a support group, find people that you are comfortable sharing with, talking with, and bouncing ideas off of. For me, that became my instagram community that I found online. But that could look like a local support group, family, or friends. But find at least one other person who can be on this journey to support you.”
She also emphasized that love and joy can still be a part of life with Alzheimer’s Disease.
“I wish people knew that Alzheimer’s wasn’t the end of their life. Yes, it is a progressive brain disease that impacts a lot of a person’s functions and abilities, but it doesn’t mean that love and joy are gone. You can still have fun and live a life that is worth living even with Alzheimer’s.”
Together, the message is clear.??
On some level, the advice goes well beyond care for Alzheimer’s patients and can be adapted for anyone stepping into the role of care partner for a chronic disease.? If you know of a care partner doing an amazing job, give them a shout out, high five, or hug!? It can go a long way in feeling supported and appreciated.??
We are so grateful to our Change Champions for sharing their thoughts and insights into the care partner role. Thanks for all you do to support loved ones and build community around them and for educating from your first hand experience!
PicnicHealth has launched an Alzheimer’s Disease and Alzheimer’s Disease Related Dementias research cohort to help researchers understand the medical journeys of patients in the real world.? To learn more, read our Alzheimer’s research cohort announcement.
Owner; Dementia Care Educator, CDP; CADDCT; CMDCP at New Dawn Dementia Understandings
2 年Thank you Picnic Health for allowing us this platform. For more thoughts and insights I invite you visit www.NewDawnDementia.com. We can Be The Change.