How to better support loved ones with dementia along with their family caretakers

The tragic circumstances surrounding the deaths of actor Gene Hackman and his wife, Betsy Arakawa, have drawn attention to the arduous role of caring for loved ones with dementia. Hackman died of heart disease a week after Arakawa died of hantavirus. Authorities said Hackman may not have been aware due to severe signs of Alzheimer's disease.

On LAist 89.3’s daily news program, AirTalk, we invited listeners to share their caregiving experiences as host Larry Mantle spoke with Heather Young, professor and dean emerita of nursing and associate director the Family Caregiving Institute at UC Davis.

Young and listeners provided a slew of pertinent advice and information on how to support those with dementia along with the caregivers taking care of them.

Start with the basics

Tanya in Van Nuys said that although family members usually mean well, she found their unsolicited advice amid their everyday absence frustrating. Young said caregivers have an intimate knowledge that others, while sincerely wanting to help, just don’t have access to.

As an outsider, “The first thing to do is to think about what is needed — what would help the family?” Young said.

Sometimes that’s just helping the caregiver by temporarily taking over some care responsibilities, giving them a bit of respite — a chance to get out of the house. Young said it should start with a conversation with families and healthcare professionals.

Keeping it in the family

For some family caregivers, or even the person with dementia, it can be difficult to accept outside help — even from their own adult children. Young said the stigma of behavioral changes or memory decline can play a role in that decision.

“It’s a natural inclination to [want] to keep your family business in the family,” she said.

According to Young, about half of the family caregivers of people with dementia in California don’t get help from anyone else in managing their situation, and even more receive no paid care. For adult children looking to step in, Young suggests not to rush into things. Instead, focus on building trust over time.

“Explore with the parent what are they even seeing as important — what are the things that are stressful to them?” Young said. “There’s a tendency for us often to go in and try to fix situations and offer solutions before we fully understand what the person is really grappling with and what the problems are that they’d like to have solved.”

Giving caregivers a break

Sometimes the best thing for a caregiver is simply a break.

Jasmine in Culver City said she and her mother share primary care responsibilities for her father, who has dementia. Recently, through an insurance stipend, they’ve been getting help from an adult day care program. She said it has been life changing for their family.

“Whenever we need a break or we have some kind of appointment or emergency that my dad can’t tag along with, we just take him to the day care,” she said.

These programs are common across the state and the professionals are usually well trained, Young said.

“Oftentimes the adult day care staff work with families to understand what triggers a behavior, what helps soothe someone if they get agitated,” Young explained.

While some pay for these programs out of pocket, Young said funding can be found through a variety of avenues, including the Veterans Administration, insurance and, if financially eligible, vouchers.

Young pointed to the California Caregiver Resource Centers as a good resource for info on eligibility and access.

How to thoughtfully check in

Paulette in Thousand Oaks asked what do you do when a parent or loved one insists on living alone.

“You can start with less invasive ways of checking in,” Young said.

She suggests having somebody call them at a regular time each day to connect. Also, reaching out to neighbors and friends who could start building connection and trust.

For those just starting those conversations with loved ones, Young said, advisors and counselors at the California Caregiver Resource Centers are fantastic resources. She also suggests visiting the California Department on Aging website.

It’s not too soon to think about paperwork

Rebecca in Tarzana, an elder law lawyer, raised a significant and sometimes overlooked detail, saying it’s important for those with early signs of dementia to make sure their legal documents are in order.

“Having these documents enables your family members to seamlessly step in and take care of you, make decisions and honor your wishes,” she said. Otherwise, “you could be headed to conservatorship and family drama.”

The documents she highlights include:

What should children look out for?

Giovanni in Whittier wondered what early symptoms adult children should be looking for in an aging parent.

Young said it all starts with making sure adult children understand who the parent is and what’s important to them.

“I think having conversations with them openly about how you pay your bills, how you manage your life, will help them know what the normal is for you,” she said.

When they have a sense of your normal routines, they can notice when your interests or behaviors begin to change. And since dementia is fairly unpredictable and doesn’t quite look the same for everyone, she adds that if you start to notice those changes in behavior, seek out professional diagnosis and evaluations to quickly get at the root of the symptoms.

Listen for more resources and advice

For Young, the deaths of Hackman and Arakawa are an important reminder to mobilize our network of connections around the primary caregiver.

Listen to the full conversation:

Check out more resources: