‘Don’t forget them

Alzheimer’s Association reminds families of patients to stay in contact over holidays

Despite the joy and wonder of the holidays, many will not be able to celebrate with those they love most. 

While everyone is impacted by the pandemic in some way, those living with Alzheimer’s and dementia, along with their families and caregivers in particular, are struggling with the isolation and inability to have in-person interaction. 

The Alzheimer’s Association is hoping to raise awareness and encourage the public to reach out to members of this group, especially during the holiday season. 

A recent Alzheimer’s Association analysis of CDC data indicated that during the pandemic, there have been 3,414 more deaths from Alzheimer’s and dementia in California than expected, an increase of 17.1% compared to the five-year average. 

This increase is not necessarily related to COVID-19, and there is speculation about the effects of isolation and lack of engagement that contribute to additional cognitive decline. 

However, residents with dementia are particularly susceptible to COVID-19 because of their age, their significantly increased likelihood of co-existing chronic conditions and their community living situations. As a result, nursing homes and care facilities have closed their doors and restricted visits to protect residents, and many of them haven’t seen their loved ones in up to nine months. 

Joe Wheatley was on the board of the Alzheimer’s Association for six years and has been facilitating its support group for at least 10 years. The group consists of Santa Barbara caregivers for people with early onset Alzheimer’s. 

The group now has to meet virtually, and it used to meet twice a month. Now it’s once a week. 

“We saw the need increase substantially once they became isolated,” Mr. Wheatley told the News-Press. 

He said the lockdowns have been challenging not only for the Alzheimer’s or dementia patients themselves, but also for their caretakers, who don’t get a break now. 

“They used to be able to take those with dementia to a day care facility, or they used to go out to dinners or shows,” Mr. Wheatley said. “They used to go to museums, go on walks, go to beaches or just go outdoors. 

“Living with someone with dementia is a 24/7 responsibility, so the stress and fatigue, both physical and mental, of caregivers has really increased substantially.”

Regarding those living with Alzheimer’s or dementia, Mr. Wheatley said that the isolation is accelerating patients’ cognitive decline. 

“What I’ve noticed with this group — and we’ve become pretty close over the last eight months — is that people with dementia seem to be declining more rapidly than they were when we were meeting face to face,” he said. “So I really think the lack of ability to get outdoors, to do any exercise, to socialize, is really impacting them. I know it is for the caregivers because their stress levels are getting pretty challenging.”

While visitors aren’t allowed at facilities, the Alzheimer’s Association recommends meeting with residents virtually over the holidays and keeping them engaged with family video/photo montages, musical performances, baking/cooking or arts and crafts. 

“People with advanced dementia don’t do well on Zoom — they have some difficulty really comprehending what’s going on,” Mr. Wheatley said. “If it is at all possible and safe, actual face to face is beneficial to everybody. We all miss that, but right now, I would just stress how important it is to keep contact, and if you can do it virtually, do it virtually.”

He said it’s hard to determine if those with dementia realize that they’re not getting together with their loved ones during the holidays this year, but it likely weighs harder on the caregivers who are unable to see their support systems either. 

“This is where the caregivers are just absolutely overwhelmed, and the need for family support is really strong in this kind of a situation,” Mr. Wheatley said. “Don’t forget them. Oftentimes, people with dementia become forgotten because it’s kind of difficult to know what to say or how to respond, but don’t forget them.”

Lindsey Leonard, the executive director of the Alzheimer’s Association California Central Coast Chapter, told the News-Press that the organization offers a wide variety of free support groups and has a 24/7 helpline to support families with any needs they may have. 

“COVID-19 has created additional challenges for people living with Alzheimer’s and all dementia, their families and caregivers,” she said. “Of the nearly 3,000 local families we project we will help this year, many have shared with us that they fear for their health and well-being and are struggling without regular social engagement.”

She added that the Alzheimer’s Association “continues to work with and urge state and federal policymakers to implement new policy solutions that will address the immediate and long-term issues impacting care facilities during the COVID-19 pandemic.”

Janelle L’Heureux, the communications manager of the association’s California Central Coast Chapter, told the News-Press, “Many families have shared with us that they or their loved ones are struggling without normal levels of social engagement from families and friends, whether they’re in long-term care settings or isolated at home. We understand that navigating the holiday season this year comes with increased frustration and worries for many of our constituents, and we are doing everything we can to help provide support.”

email: gmccormick@newspress.com

FYI

The 24/7 Helpline for the Alzheimer’s Association is 1-800-272-3900. 

Visit www.alz.org/cacentralcoast for more information and tips for dementia care.