Every day, more and more families are touched by dementia. If that includes yours, palliative care can help — from everyday questions to big-picture guidance.
Two experts on the HopeHealth palliative care team share what this looks like, whether your loved one lives at home or in a care facility.
“We’re here to walk beside you,” says nurse practitioner Paula Welch, NP, ACHPN.
Palliative care helps you understand and prepare for the later stages of dementia.
With any disease, knowing what’s ahead can be a comfort. Palliative care teams shed light on the changes your loved one will likely experience as their dementia progresses, from typical behavior changes to their physical and cognitive abilities.
“We have clinical tools to tell us what a person’s prognosis is going to be, and what comes next,” says Paula. “When the next stage comes, if it’s expected, it’s not so scary.”
“It helps caregivers feel in control, and that we’ll be here to support them with whatever happens,” adds Anne-Marie Cullimore, a social worker on HopeHealth’s palliative care team.
They work with your loved one’s other doctors to manage difficult symptoms.
Palliative care experts have special training in complex symptoms. For dementia, which affects a patient’s ability to communicate, this can include identifying the root cause of what’s happening.
For example, Paula was asked to evaluate a patient who’d become combative in the early afternoons. His nursing home care team was considering anti-anxiety medication. First, they wanted Paula to weigh in.
After a physical exam, including a close look at his joints, she discovered the problem wasn’t anxiety: It was arthritis. The patient had a history of arthritis pain in his fingers. By midday, his morning dose of Tylenol had worn off, just as the staff was cleaning his hands after lunch. With a simple adjustment to his Tylenol, the pain went away — and with it, the aggressive behavior.
“That’s the difference palliative care can make: We can take a step back and take a look at the bigger picture,” says Paula.
They offer tips for interacting with your loved one.
When your loved one has dementia, your relationship shifts. Palliative care teams can help with this adjustment.
When Anne-Marie visits patients and families at home, she brings plenty of informative handouts. She also spends time simply explaining the dementia experience, and what it means for caregivers.
She’ll encourage caregivers to communicate a bit differently: Instead of correcting their loved one when their timeline is off, just go with it. She also gives ideas for quality time, like looking at photo albums together.
“People with dementia may not be able to communicate clearly or remember who you are, but they will respond to the love they receive from you,” she tells them.
They can suggest community resources for Alzheimer’s and dementia support.
Often, palliative care teams can help you understand and access supports you might not find on your own. That includes state-run programs as well as free resources like southeastern Massachusetts’ Alzheimer’s Disease Assistance Program.
If you’re considering home care or a memory care facility for your loved one, they can share information on that too.
“I worked with a couple last year where the wife, who was the caregiver, was about 5 feet tall. Her husband was over 6 feet. Down the road, she didn’t think she would be able to physically care for him at home,” says Anne-Marie. “We talked about the future, and what options might be available in their community.”
They can guide you through difficult decisions.
At later stages of dementia, your loved one won’t be able to tell you which medical treatments they do and don’t want. If physical problems come up, would they want to be hospitalized for aggressive treatment? If they have appetite loss, how would they want to address that, if at all?
Palliative care teams can help you make informed decisions, sharing insights into how certain choices impact quality of life. And they’re skilled at leading these crucial conversations.
“We talk to families a lot about ‘the empty chair,’” says Paula. “If your mom was able to sit in that chair right now, what would she have said about what she wants in the time she has left?’ Families are so grateful to have somebody to talk to about these decisions.”
That includes knowing when to transition to hospice.
Many families aren’t sure of the difference between palliative and hospice care, or when to ask about hospice. Having palliative care on the team means having a guide to this transition.
Paula starts these conversations with families early. She explains not just the eligibility requirements for hospice, but the additional supports it includes — like a hospice aide for activities like eating and showering, and volunteers who offer companionship.
“Many patients and families have been living with dementia for a long time,” says Paula. “To have hospice’s support toward the end is so beneficial.”
Palliative care includes emotional support for dementia caregivers.
Throughout their loved one’s illness, dementia caregivers often experience anticipatory grief.
“It’s sometimes referred to as ‘the long goodbye,’” says Anne-Marie. “You’re dealing with the loss of a person who is still there with you, but you’re not able to engage in the same ways.”
As part of her time with families, Anne-Marie offers emotional support and a sounding board.
“What they’re experiencing is hard,” says Anne-Marie. “I want them to know that it’s okay to feel however they feel, and we’re here to support them.”
What is the role of palliative care in Alzheimer’s and dementia?
If your loved one has dementia, you may be able to add palliative care on top of your other care. It’s an extra layer of support, provided in harmony with the care your loved one is already receiving.
And it adapts to what your loved one and family need most.
“You’re in control. We will adjust to whatever decisions you make, and support you,” says Anne-Marie. “For most families, it helps just to know they’re not alone.”