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Spiritual Wellness as Self-Care for Dementia Caregivers

Older man kissing the cheek of older woman on the beach

Dementia caregivers often experience stress and burnout when it comes to managing daily challenges. Spiritual wellness and self-care are essential to improving resiliance, mental and emotional well-being, and mindset for those who care for a loved one with Alzheimer’s.

What is dementia?

Though many people use the terms dementia and Alzheimer’s interchangeably, there are definite differences. Dementia is an umbrella term that describes symptoms affecting memory, thinking, and social abilities and that interfere with daily functioning. Dementia is not a specific disease, but rather the symptom of a disease. For example, dementia affects problem-solving, mood, personality, memory, behavior, judgment, language, senses, and communication. Alzheimers’s is a specific disease and one of the most common causes of dementia. Other diseases and diagnoses can also cause dementia including Parkinson’s.

The movie Still Alice depicts the effects of Alzheimers’s by raising awareness of the way its gradual, progressive decline impacts the everyday life of an individual—and the lives of loved ones. This heartbreaking movie elevates the disease to the national stage by portraying how it steals from Alice what she values most: her intellect. Still Alice is really Alice’s story, and it provides an opportunity to see the differences in how her husband and children cope with Alice’s disease.

What’s it like for those with Alzheimer’s and for dementia caregivers?

Still Alice does a realistic job of depicting the difficulty and frustration for all involved. Nancy Brain offers the following insight in her basic caregiver preparedness guide, Alzheimer’s Preparedness Ready or Not?—“The name of the game in walking the Alzheimer’s Journey is to make all decisions easy, peaceful, and possible. This can be brought about by using the ‘illusion of choice and control’ option. We want to offer choices so our loved one enjoys a safe measure of control. For example, offer two choices that we think would be beneficial to both parties and can be easily accomplished. That way everyone is happy with the choice outcome, no matter which one it turns out to be.”

If you or your family have walked with this disease, you know there is no known cause and no cure. It is important to begin with a diagnosis and develop a basic knowledge so that you acknowledge, accept, and face Alzheimer’s daily challenges. Facing the elephant in the room and preparing for a new normal will be essential as you begin to learn how to handle the stormy waters ahead.

Over time, you will learn the art of being the adult in charge. Simply be who your loved one wants at the time, and do not expect her or him to be in your reality—but rather enter your loved one’s reality and timeline.

Care for the caregivers

Caring for people who suffer from Alzheimer’s disease is stressful because of caregivers’ responsibilities and the physical, mental, social, and financial burden of caregiving that progressively increase over the course of the disease. Family caregivers usually experience physical and mental burnout and may lose their ability to cope with all they have to manage. Focusing on spiritual wellness and self-care is a way to assist with burnout, stress, and improve well-being.  Taking some time for self-reflection, focusing on a sense of purpose, tapping into inner peace and joy, making space for stillness and rest, and connecting with something bigger can be a big help to improve caregivers’ overall health and well-being.

Soul Care Urban Retreat Center is committed to Help the Helpers like those who are dementia caregivers. They provide local space and resources to help dementia caregivers and family members a place to care for themselves and their spirits. Quiet Pods are one way to experience rest and renewal. Spiritual wellness and self-care are essential to improving resiliance, mental and emotional well-being, and mindset for those who care for a loved one with Alzheimer’s.

Why support this year’s Walk to ENDALZ?

According to the Alzheimer’s Association, in 2019 there were 218 geriatricians in the United States. A 137% increase in geriatricians will be needed to meet the projected U.S. Alzheimer’s population in 2050. The 2020 cost of caring for those with Alzheimer’s and other dementias is estimated to total $305 billion, increasing to more than $1.1 trillion by midcentury. Once you have a glimpse into what it is like to walk in the shoes of a person with Alzheimer’s, I am confident you will choose to support the Alzheimer’s Association’s research and programs in order to ENDALZ!

Guest blogger for Soul Care:

Karen Roth Gehrt, RD, LD, Ed.D., community resource director for Amber Glen Alzheimer’s Special Care Center, Urbana, IL, is a certified dementia live coach/educator and a registered, licensed dietitian. Contact Karen at karen.gehrt@jeaseniorliving.com or phone (217) 384-0100.

Article modified from one originally published in the October 3, 2020 issue of The Prime Life Times.

A checklist to help families do a self-assessment on memory loss and dementia.

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