Alzheimer’s and other dementias are often referred to as “family diseases” because of how the chronic decline of an individual with dementia can affect those closest to them. Caring for a loved one with dementia can be complicated, but hospice in memory care facilities can offer families and caregivers a supportive option in their search for a holistic approach to care.
Individuals with dementia accounted for the third-highest amount of all patients who received hospice care, according to a study completed by the National Hospice and Palliative Care Organization (NHPCO). Because dementia is generally a long-term condition, knowing when to incorporate hospice can be a challenging task.
Read on for an in-depth look into hospice for dementia, including ways to assess when hospice care is needed, and questions to ask hospice providers that can help ensure you find the right fit for you and your loved one. Plus, learn from experts how hospice care can help provide a higher quality of life for individuals with dementia and offer respite options for caregivers.
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Hospice for dementia differs from hospice for other types of conditions because of the reliance on what the NHPCO calls an individual’s inner circle. This consists of the individual’s family, friends or primary caregivers. While the interdisciplinary hospice team offers various supports, the inner circle provides daily care.
As part of a team-oriented approach to caring for an individual with dementia, it is common for a hospice care team to incorporate providers of medical care and pain management in addition to those who offer emotional and spiritual support. This interdisciplinary team may include:
An individual’s inner circle is important because most hospice care occurs in the place the person calls home. While this may be their private residence or the residence of a family member, it can also include a care community such as a memory care facility or nursing home, depending on the individual’s current level of care.
While in hospice care, a patient’s condition can fluctuate, especially as their dementia progresses, necessitating different levels of care. There are four levels of hospice care according to Ben Marcantonio, chief operating officer of NHPCO:
Patients can move between levels of care numerous times throughout the duration of hospice care. Sometimes, an individual will need to move from their current condition to a higher level of care to be stabilized. Or, they may move to respite care to give family caregivers a temporary break, explained Aparna Gupta, vice president of quality at NHPCO.
The primary goal of hospice care for dementia is to provide a higher quality of life for the patient. There are a variety of ways the hospice team aims to achieve this goal:
Hospice in memory care facilities provides an extra layer of support for individuals with dementia, according to Lisa Apel, a licensed professional counselor in Colorado specializing in grief and family relations. “They have more people coming in to connect,” Apel pointed out, noting that staff at a memory care community offers opportunities for an individual to engage with different people in different ways.
A person may benefit from emotional, sensory, and spiritual connections, even in advanced stages of dementia. Hospice teams can support families and patients by offering helpful suggestions on how they can continue to connect, according to the National Institute on Aging.
Hospice care not only helps to keep a patient comfortable: It also provides benefits to the patient’s family or caregivers. Caring for an individual with dementia presents numerous challenges for caregivers, who report high amounts of burnout along with mental and physical health issues, according to a study in The Gerontologist.
Hospice may offer caregivers the following benefits:
For families and caregivers, hospice is so often correlated with dying, but Apel reminds people that hospice is a way to support their loved one to go on living at the end of life.
“One of the great strengths of hospice is that it looks at the family as being the unit of care, as opposed to just the patient. As you work with families, you’re giving them the tools to work through the illness and after,” explained Kenneth Doka, senior vice-president for grief programs for the Hospice Foundation of America.
Because Alzheimer’s and other dementias progress slowly, end-of-life wishes can be a challenge to discuss when a person is first diagnosed. However, addressing hospice before the individual can no longer make important decisions is essential, according to the National Institute on Aging.
Most hospice care is covered through Medicare, but there are requirements that an individual must meet before becoming eligible. The following are the basic qualifying criteria for hospice, according to Medicare:
Families of those with end-stage Alzheimer’s disease who are living in long-term care facilities rarely receive grief or bereavement support if they don’t elect hospice care for their loved one, according to a study in the Journal of the American Geriatrics Society.
While the right time to start hospice care for a loved one with dementia will differ for each family, “it is so important for families to understand that hospice care doesn’t mean they are giving up,” explained Meghan Donahue, director of community engagement for the Alzheimer’s Association’s Colorado chapter. “It is the recognition that there is a time when a cure is no longer possible and it is time to maximize the quality of life for their loved one. “
When researching hospice in memory care facilities, Doka recommended that families or caregivers meet with the hospice provider. He said that it is important to assess both the family’s needs and the needs of their loved one, and to be direct when asking hospice how they can meet those needs.
Consider the following questions to help you determine if a hospice provider is a good fit for both you and your loved one in need of care:
When meeting with a provider, Apel recommended having at least two loved ones in attendance. She explained that because discussing end-of-life care can be emotional, having two individuals present can help fill information gaps.
Memory care facilities that offer hospice services are “the best of both worlds,” said Doka. “You’re taking a memory care community, which offers certain advantages, and combining those with the resources of hospice. To me, it’s a no-lose situation.”
Are you a caregiver considering a memory care community with hospice services for your loved one? A Place for Mom’s local, experienced Senior Living Advisors can help you find memory care community options to accommodate a holistic approach to care while matching your lifestyle needs — all at no cost to you.
Alzheimer’s Association. Hospice care.
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Gupta, A. (2022, March 22). Personal communication [Personal interview].
Medicare.gov. Hospice care.
Marcantonio, B. (2022, March 22). Personal communication [Personal interview].
Miller, S.C., Gozalo, P., Mor, V. (2001, July 11). Hospice enrollment and hospitalization of dying nursing home patients. National Library of Medicine.
Murphy, K., Hanrahan, P., Luchins, D. (2015, April 27). A survey of grief and bereavement in nursing homes: The importance of hospice grief and bereavement for the end-stage Alzheimer’s disease patient and family. Journal of the American Geriatrics Society.
National Hospice and Palliative Care Organization. (2020, August 17). Facts and figures report on hospice care in America.
National Hospice and Palliative Care Organization. (2022). Hospice care.
National Institute on Aging. National Institutes of Health. (2022, January 31). End-of-life care for people with dementia.
Hospice Foundation of America. The longest loss: Alzheimer’s disease and dementia.
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