Palliative care: what caregivers should know

WHAT ARE SERVICES FOR DEMENTIA PATIENTS AND CAREGIVERS? When a loved one has dementia, caregivers may need to make important decisions, Jackson says. A palliative care team can help. “Part

of what we do is help bring together the patient and the family and the key other clinicians to make sure that we’re all aligned,” Jackson says. Teams not only ensure caregivers understand

what to expect down the road, but they help design a care plan that best supports the patient.  They can help caregivers make sense of treatment options, including guidance on conditions

that can be managed at home instead of in a health care facility. For dementia patients, who may not understand what is happening, going to the hospital “can sometimes make things worse for

them in the short term,” Jackson says.  Edgerly of the Alzheimer’s Association says it’s never too early to ask for a consultation with a palliative care team, even if a person with dementia

is not experiencing discomfort or pain. Palliative care teams “know what you need to have in place, so it can help reduce the stress” of planning, Edgerly said. “Wouldn’t it be nice to have

a plan before you have pain and discomfort?” HOW TO FIND PALLIATIVE CARE Experts recommend that people looking for palliative care ask their doctor for a referral. People also can find a

list of providers at GetPalliativeCare.org, run by the nonprofit Center to Advance Palliative Care. If you have difficulty finding a provider in your area, telehealth may be able to help. A

2024 study in the _Journal of the American Medical Association_ found that people with lung cancer who received telemedicine palliative care had a quality of life that was just as high as

those who received care in person. Kotfer says that she’s able to remain active thanks to the palliative care she received for her lymphedema.  “I don’t let it slow me down,” Kotfer says. “I

was out on my ATV this weekend.” RESOURCES FOR CAREGIVERS NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION has resources at CaringInfo on how to get palliative care and differences between

palliative and hospice care.  AMERICAN ACADEMY OF HOSPICE AND PALLIATIVE MEDICINE explains financial options for getting care and the type of therapies used in palliative care.   AARP’S

CAREGIVER SUPPORT LINE is toll free, and agents can guide you to resources. The lines are staffed 8 a.m. to 8 p.m. ET weekdays at 1-877-333-5885 or in Spanish at 1-888-971-2013 AARP’S 211

INITIATIVE with United Way aims to connect caregivers to help in their state or community. Dial 211 or go online for referrals. AARP also has family resource guides with directories of

services in 18 states so far. PALLIATIVE VS. HOSPICE CARE: WHAT’S THE DIFFERENCE? Even medical professionals sometimes use the terms palliative care and hospice care interchangeably, but

they are not the same. Palliative care treats symptoms of a serious disease, regardless of the prognosis. It aims to provide comfort and reduce pain. Palliative care can begin as soon as

someone is diagnosed and can coincide with treatment to cure or remediate an illness, such as chemotherapy or surgery. People receiving palliative care can recover fully. Hospice care also

focuses on providing comfort but for people at the end of their lives. People in hospice care are no longer seeking a cure. Hospice care starts after treatment of a person’s disease is

stopped and is typically offered when someone is expected to live six months or less. The AARP FAMILY CAREGIVERS DISCUSSION GROUP on Facebook offers support from fellow caregivers who share

stories and advice. AARP’s website also has an online caregiving community where caregivers can interact. _This story, originally published in 2019, has been rewritten and expert advice has

been added._