The COVID-19 pandemic has added another dimension for caregivers working from home and under an incredible amount of stress. But there are ways the James L. West Center for Dementia Care in Fort Worth can assist.
Supporting a loved one living with dementia during COVID-19
“Let go of what was – try to live in their reality to support them in their walk with dementia.” Those are words that I share often with families calling for support and answers to their caregiving questions.;
In Texas, approximately 1.45 million unpaid caregivers provide care to Texans with Alzheimer’s disease. This equates to an estimated 1.65 billion hours of unpaid care at a cost of approximately $21.6 billion per year.
Every one of us is forming new connections in various ways as a result of the pandemic. And working from home while caregiving adds another dimension to the caregiver relationship.
Supporting families and caregivers is one of the West Center’s priority missions. As Fort Worth’s oldest faith-inspired, not-for-profit nursing care organization serving persons living with dementia, the center is recognized nationwide for offering specialized education for caregivers, healthcare professionals and the community at large.
COVID-19 brought the transition of the center’s Dementia & Caregiver education programs and support groups to new virtual platforms. This transition has provided amazing opportunities for expanded outreach and new community collaborations.
The center’s newest collaboration, with the Fort Worth Public Library System and Dementia Friendly Fort Worth, brings together three of Fort Worth’s greatest information resources.
Coupling the West Center’s caregiver education programs with the library’s print collection, on demand services, video streaming and online book club has expanded adult programming.
Dementia-Friendly Fort Worth completed the collaboration with the addition of online daily activities for persons living with dementia.
This three-part collaboration reflects how area dementia-related nonprofits are responding to the current reality: families wrestling with how to care for their loved ones living with dementia while managing life in light of COVID-19.
Looking broadly, there are three distinct family situations managing life today:
– Families with a loved one inside an assisted living or nursing facility
– Families with a loved one at home
– Families with a loved one showing early signs of dementia and living either at home or independently
The West Center understands the challenges of caregiving as the center provides 24-hour care and support to nearly 100 residents in its residential long-term care setting. COVID-19 has impacted every aspect of the center – staff, residents and families.
The following suggestions on caring for those living with dementia are at the core of what we teach care partners here at the West Center:
1.) Live in their world. Far too many times, I have seen families attempt to “pull Grandma back into reality” when she starts talking about old memories or imagines she is somewhere else. Trying to “bring her back” into your reality is frustrating for each of you. Jumping into her reality with her – and asking questions to keep her engaged – leads to a mutually enjoyable experience.
2.) Protect yourself – the caregiver. The caregiver is under an incredible amount of stress. You must manage your own schedule while offering what may be around-the-clock personal attention and care. It is not unusual at all for the caregiver to develop health issues and even pass away before the loved one. Having members of your family or team join in the care regimen is critical for you, the family member caregiver, to refresh and maintain your good health – both mentally and physically.
3.) Pay full attention to a loved one with dementia is critical. They need to feel that they deserve your time and that you truly want to be with them. You want to care FOR them, but just as important is to show that you care ABOUT them. Maintaining a sense of purpose and respect for you loved one is a top priority. Ask them questions and make them the star of the conversation.
4.) Understand that they lose track of time. Just when you know you have been gone for 10 minutes to wash the dishes and clean up after a meal, your loved one may feel that you have been gone for hours. Be sensitive to their possible perceived loneliness.
To build upon these concepts and to provide additional tools, the West Center has launched a Zoom caregiving series featuring nationally known dementia expert Teepa Snow, founder of Positive Approach to Care.
The series, titled “Virtual Conversations on Caregiving, Coping, and Sustaining Through Change,” is available via Zoom presentation at absolutely no charge.
– July 14: 10:30 – 11:30 a.m. with Teepa Snow “Making the Connections You Want”
– Aug. 4: 11:00 a.m. – noon with Beth Nolan “Sustaining Your Gains”
– Aug. 25: 11:00 a.m. – noon with Teepa Snow” “Engagements to Help Us Live Our Lives Well”
The West Center’s philosophy of care is one that focuses not on what’s lost, but on nurturing what remains for our residents and their loved ones.
This philosophy is a result of Mrs. West’s loving tribute to her husband and continues to guide the decision-making of the board and staff. The Center offers help and hope – for those already affected by dementia and for those who may be in the future. Until there is a cure we are here to care.
Jaime Cobb is the Vice President of Dementia & Caregiver Education at the James L. West Center for Dementia Care in Fort Worth.