How to Help Dementia Patients and their Families During the Pandemic

Resources and Advice from a Senior Care Consultant

Credit: Courtesy

Luciana Mitzkun Weston is a Senior Care Consultant specialized in Memory Care. She is the Community Services Director at Villa Alamar Memory Care and Alexander Gardens Assisted Living in Santa Barbara, and the author of Ahead of Dementia and other books focused on memory care.

“I don’t know what to do with my mother anymore! Last night, she shoved my 6-year-old son against the balcony rails, and now I fear for his safety. I need help!”

These are the types of urgent calls for help that I and other Santa Barbara memory-care consultants are receiving during the COVID-19 pandemic.

While we are all affected by the measures our community must take to mitigate the spread of the coronavirus, families caring for cognitively impaired seniors have been particularly impacted. For them, social isolation and restricted access to supportive services have severed their connections with programs that are essential for keeping their loved ones safe in the home. Furthermore, the person they are caring for cannot comprehend the need for isolation or for adhering to safety protocols, such as wearing a mask.

According to the Alzheimer’s Association, nearly 50 percent of seniors in their eighties suffer from some form of cognitive impairment, often the result of creeping symptoms of Alzheimer’s and vascular disease. These are the two most common causes of dementia, which is a progressive deterioration in brain functioning that affects judgement, reasoning, language skills, and memory. Patients strive to retain their independence; however, they increasingly need help with meals, transportation, medication, personal hygiene, financial management, scheduling, and everyday activities, as well as supervision to ensure their safety at home and to monitor their outings.

As the symptoms of dementia increase and the ability to function independently decreases, the caregiver may find that home care is no longer in the best interest of the patient. More appropriate care can be provided in an assisted-living facility that specifically offers memory care designed to meet all of the patient’s needs. These residential care facilities (or RCFEs) are homes where residents participate in appropriate recreational activities and receive monitoring and assistance with all aspects of daily living in a secured, nurturing environment. They differ from nursing homes or skilled nursing facilities in that they do not provide nursing care, only custodial care. There are many such homes in Santa Barbara County providing excellent care.

Many dementia patients are able to delay a move to assisted living for quite some time if they have the assistance of a dedicated caregiver who is able to step up and manage every aspect of their daily living. Caring for a loved one with dementia requires time, knowledge, commitment, and never-ending patience. The caring relationship may extend for many years while dementia symptoms slowly worsen over time. The caregiver, most likely a close family member — a spouse or a son/daughter — needs the help of supportive programs to provide continuous care.

Adult day programs, such as services offered by the Friendship Center in Santa Barbara and Goleta, help keep seniors socialized and engaged in meaningful activities, while affording respite to family caregivers. Classes and programs offered at Community Centers are also important outlets for these families, providing a safe and stimulating environment outside of the home for cognitively impaired seniors.

Community-based support programs are now closed due to concerns about COVID-19. If family caregivers did not already know their value, they are now discovering how very indispensable these programs really are!

Appropriate levels of activity and socialization are essential to patients with dementia. Without proper stimulation, patients are at increased risk of developing some of the behavioral and psychological symptoms associated with dementia, including agitation, paranoia, anxiety, and, in severe cases, aggression. Being confined to the home and depending solely on the primary caregiver for all activities and social needs is a recipe for a meltdown. Dementia-related meltdowns can be dangerous and may impair the caregivers’ ability to continue caring for their loved ones at home.

Friendship Center Family Services Manager Kim Larsen reports seeing a greater number of caregivers who are in crisis mode. “Before we closed our doors on March 16,” says Larsen, “families were able to bring their loved ones to Friendship Center for fun games, mentally stimulating activities, healthy and nutritious meals and snacks, and, most importantly, socialization. The calls that we are handling now have much more to do with calming the caregiver down, providing helpful tips on how to handle various issues for the member to keep them calm and engaged. The fact is that due to lack of socialization, physical activity, and mentally stimulating activities, a large number of our members have seen a marked progression in their dementia. This has had a very serious impact on the family caregiver(s).”

In normal times, a majority of caregivers feel that they do not have enough support to fulfill their caregiving duties. Many are also raising children while some are managing health problems of their own. Now that we are in the midst of the COVID closed/opened/closed/rinse-repeat strategic fiasco, caregivers must protect their seniors who are within the most vulnerable population for developing COVID complications. They may find themselves confined to their homes with multiple generations of family members and dementia patients who cannot understand the pandemic, cannot be trusted to wear a mask, and cannot be taken anywhere a mask is required. Caregivers feel trapped at home with their loved ones (who are increasingly bored, agitated, and anxious) and without their usual system of support.

According to Kendra Gardner-Webster, Executive Director of the Coast Caregiver Resource Center, a caregiver support program of the Cottage Rehabilitation Hospital in Santa Barbara, there has been a steady stream of referrals throughout the pandemic. Callers seeking help are matched with specialized family consultants and receive counseling and resources for dementia care. Their care consultants can also help family caregivers find respite, support groups, and free courses on caregiving resiliency.

“We really feel that now, more than ever, caregivers need as much assistance and support as they can get to reduce feelings of isolation, stress, and depression or anxiety,” says Gardner-Webster. “We are here to support caregivers in whatever way we can for as long as they need that support.”

Gardner-Webster also urges caregivers to reach out for assistance and stay connected. There is a variety of resources available to caregiving families even throughout the pandemic, including online programs led by local memory specialists, online support groups for caregivers, and in-home respite care.

A few assisted-living facilities in Santa Barbara are also accepting residents for short-term stays, also referred to as a respite stay. A short-term stay at a memory care home can provide the caregiver with a much-needed break from caregiving duties and help the patient receive appropriate care and socialization in a protective environment. Every facility will have its own requirements for admission, but generally it will be contingent on room availability, COVID testing, and physician assessment. Families will also have to agree to adhere to the facility’s visiting restrictions, which are being meticulously enforced during the pandemic.

For Kristin and Bryan Bowe, placing Mom in respite care was a difficult decision but one they are happy to have taken. Caring for two children at home while expecting a third one and caring for Bryan’s mom, Marjorie, at home during the pandemic became a big stressor for the family. Marjorie used to attend day programs at the Friendship Center and became increasingly anxious after its closure. With the guidance and assistance of the consultants from the Coast Caregiver Resource Center, the family found Villa Alamar, a memory care community in Santa Barbara where I serve as the Director of Family Services, and we were able to admit Marjorie for a respite stay in July.

“I can’t express enough how valuable it is to us knowing that Mom is in a safe environment and receiving the care that she needs,” said Kristin. “I can actually stop worrying about where she is and what she is doing at every moment and take care of all the other things I must do for my family now. I know she is safe, and she tells me she is so happy to be with her new friends!”

While placement in assisted living can be a welcome respite for some families, others fear placement due to concerns of coronavirus exposure. Each family must outweigh the risks versus the benefits, inquire about and be made aware of the facility’s COVID-19 prevention strategies. There have been outbreaks in some facilities in our area, but by closing doors to visitors, observing social distance, enforcing the use of masks, and performing daily health checks, most assisted-living homes have been able to restraint the spread of the virus within their communities.

The number of people testing positive for the coronavirus in Santa Barbara County continues to soar, doubling in July alone. While it is everyone’s responsibility to protect the most vulnerable in our community from exposure to the virus, dementia caregivers need additional support to maintain a healthy home environment for the entire family. There is a large network of providers in our area ready to help. If you are caring for a loved one with dementia, make sure to contact one of our service agencies and learn more about the kinds of assistance that are available to you and your family.

Here are key local resources:

Coast Caregiver Resource Center: Anyone in Santa Barbara County who is caring for a loved one with dementia or other neurological issue can reach out directly to Renee Kuhlman, at (805) 868-8472 or rkuhlman@sbch.org.

Alzheimer’s Association: Offers care consultations, workshops, and local support groups for caregivers. While initially the in-person support groups provided by the local chapter of the Alzheimer’s Association were suspended, the Association has now reassembled the groups in a virtual format. Visit alz.org/cacentralcoast/helping_you or call (800) 272-3900.

Friendship Center Adult Day Services: While the adult day center is closed for in-person group activities, the organization is offering: virtual activities through Zoom, home-delivered take-care totes and Hot Lunch program, drive-in activity and porch visits, and caregiver support, among other services. Call (805) 969-0859 or visit friendshipcentersb.org for more information.

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