I have a dear friend whose mother had Alzheimer’s. While my friend wishes to remain anonymous, when she heard about this post, she shared stories about her mother and felt honored to let us use her words to support awareness of this condition:
Her smile. It was the best welcome you could ever ask for. Of course, it was typically part of her joyful, mischief-based belly laugh. She was motion and co-motion; we danced until she couldn’t remember that she loved dancing. Some days she would recognize me and others she didn’t, but I could still see the wonder in her eyes at what we were doing.
Because June is the Alzheimer’s Association Group’s “Alzheimer’s & Brain Awareness Month,'' we at Caregiven want to join in and honor caregivers of a loved one with Alzheimer’s (or another dementia). We also want to take this opportunity to recognize the impacts of COVID-19 on caregivers for those with Alzheimer’s.
Globally, 50 million people live with Alzheimer’s and other dementias. In the US, it is estimated that more than 6 Million people are living with Alzheimer’s-- that number is projected to be 13 million. In the US, Alzheimer’s and dementia deaths increased 16% during the Covid-19 pandemic. These are not insignificant numbers because every single one represents a story and a person who laughed and maybe danced like my friend’s mother did.
Coping with Alzheimer’s Caregiving During a Pandemic
According to a survey conducted by USAgainstAlzheimer’s, 92% of dementia caregivers reported stress increase as response to the pandemic. Many people with dementia were taken out of care facilities and at-home caregiving became a 24/7 challenge as most caregivers worked from home. My friend and experienced caregiver also said:
I was fortunate because I got to visit my mom. It was before COVID, and she was in a full time nursing facility. Now, I can’t imagine not being able to visit, worrying about how forgetful she was with hygiene, and wondering all the time if she was scared.
The impact of COVID-19 on dementia caregivers is severe. So much changed so fast for everyone.
The major stressors were and remain:
- Increased caregiving duties by family and non-professional caregivers
- Rising psychological and physical stress when people moved their loved ones out of the full time facility into their homes
- General physical vulnerability to COVID-19 in older adults with cognitive issues like forgetting to wash their hands, wear a mask or take other precautions
- Fear that diseases like COVID-19 and the flu can worsen cognitive impairment
A Changed Landscape for Alzheimer’s Caregivers
Many smart people will spend many years tracking and explaining how COVID-19 changed humanity; not the least of which being a dramatic shift to professional and social interaction online. For caregivers of a loved one with Alzheimer’s or dementia, the following internet-based groups stand out as helpful tools I learned about through the experience of others:
There are a lot of communities on Facebook where caregivers and friends can find support and advice.
The people at Daily Caring, a caregiving information curation site, put together a list of private support groups on Facebook for a range of caregiving experiences and a guide on how to join.
Below is a quick list for Alzheimer’s, Dementia, and caring for elderly parents:
A “supportive haven” for dementia caregivers to share without any worries about judgement.
A support group without any religious affiliations but providing a safe space for people to vent and communicate -- even especially if that comes from a raw place.
Created by a patient who was diagnosed with early onset Alzheimer’s at 57, this group offers support, awareness, and a place for people to share their experiences.
This is a broader group focused on helping those in the Sandwich Generation cope with caregiving for elderly parents.
E-Health and the Need for More Educational Training
A research paper from Alzheimer's & Dementia: Translational Research & Clinical Interventions points out a need for continued psychological support and education for caregivers for loved ones with neurological disorders in the wake of COVID-19. One way to do that is to leverage the ‘connectedness’ resulting from the pandemic and the fact that caregivers can participate in an online class or training without having to leave home.
The Alzheimer’s Association has undertaken several efforts to improve how dementia care is studied and delivered. Its recent dementia care practice recommendations put individuals with dementia and their caregivers at the center of how care should be delivered (see Figure below). Central to this model is how to measure and design care for people with dementia by moving to an approach that focuses on the individual’s unique needs, personal experiences and strengths.
In-Person Relief for Caregivers
Respite for caregivers. Yes, please! With vaccination rates increasing in the US and other parts of the world, dementia patients and caregivers have the opportunity for in-person appointments and consultations. Telemedicine is good and remains convenient, but office visits are necessary, too. Even a doctor’s visit can help alleviate a sense of isolation for caregivers.
How Caregiven Helps
Caregiven is designed to support caregivers.
Stress and self care are typically the first thing we put on hold. But, even if it is one thing that you can look forward to a week, make the time.
We have articles and support on movement, talking it out with someone, and taking care of yourself as part of our “Survival and Resilience” milestones on the Caregiven app.
But we will always be learning and listening, so we'd love to hear about ways YOU, as caregivers, recommended for self-care.
On our future product development path is the ability to choose support based on factors such as condition, multiple chronic conditions, and caring for more than one adult. The pandemic only accelerated a shift to tech adoption among older consumers and this extends to those in senior living situations.
One of Caregiven’s best offerings, in my opinion, are in the “difficult” category. These are difficult but necessary topics and we don’t think they improve through a hesitancy to discuss them. But as someone who’s been a caregiver of several types, I can confirm how much of a relief it is to have help revisiting necessary documents like Advance Care Planning and Decisions About Do-Not-Resuscitate, and it’s even more of a help when we’re still dealing with COVID.
We get out of bed and go to work (sometimes pretty close to that bed these days ;) because we believe in the insights and guidance provided by Caregiven as a tool. But ours isn’t the only tool out there and should be used as one of many in your resilience toolkit alongside social support groups.
Reflecting on her caregiver toolkit, my friend ended our conversation by sharing:
I am so grateful for social media and capturing the videos, smiles, laughter, and dancing with my mom. She shared so much joy with me-- even though sometimes she did not know who she was giving that gift to.
I understand and wanted to share this with you as well.
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