According to statistics from the Alzheimer’s Association, dementia is one of the top causes worldwide of disability and dependency among older adults. In 2023, 1 in 9 adults (10.8%) age 65 and older were living with Alzheimer’s dementia, and the CDC expects that number to nearly triple by 2060.
However, the most recent NHPCO Medicare figures indicate that only 20.9% of end-stage dementia patients died in hospice. That large gap in figures is mostly because dementia is generally a long-term condition and knowing when to move a patient to hospice care can be difficult.
September is World Alzheimer’s Month and with these statistics in mind, we wanted to discuss the treatment ongoing of Alzheimer’s and dementia in hospice care. We’ll use this blog to look at the benefits of care and treatment of Alzheimer’s and dementia patients and caregivers in hospice, when to choose hospice for Alzheimer’s patients, and important things to consider when selecting a hospice provider for dementia patients.
What does hospice provide for dementia patients?
Many hospices provide a team-oriented approach to care, usually consisting of physicians and nurses with pain management expertise, social workers, chaplains, and bereavement specialists focusing on emotional and spiritual support. The main difference between dementia and Alzheimer’s patients is the inclusion of what the NHPCO calls a patient’s “inner circle.” This is a group of family, friends, or other primary caregivers. This inner circle is mainly there for the patient’s day-to-day care with the hospice team providing specialized support. The hospice team also helps coach the inner circle on how to care for the patient and respite care when the inner circle needs a break.
Including the inner circle of personal caregivers is important for the patient’s everyday comfort. They know the patient’s likes and dislikes, they can speak with the patient and tell stories, and can offer a steady, familiar presence for the patient. This steady contact can also help keep the patient calm as various medical and spiritual providers come in and out of their space throughout the week.
Hospice benefits for caregivers
The benefits of hospice don’t end with the patient. Caregivers and family members can also benefit from hospice care teams once their loved one switches to hospice. Caring for loved ones with dementia and Alzheimer’s is an everyday challenge. It can take a toll on a caregiver’s physical and mental health, and burnout occurs frequently.
Hospice care teams can offer caregivers a break from care, coaching and instruction on care for their loved ones, 24/7 access for questions and support, and counseling on grief and bereavement. All of these pieces make sure that caregivers can keep providing support for their loved ones as they enter end-of-life. It helps everyone be as present as possible during these remarkably difficult times.
Dr. Kenneth Doka, senior vice president for grief programs at the Hospice Foundation of America, explains the benefits in this way:
“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…”
When to choose hospice for Alzheimer’s patients
Overall, for a patient to be admitted into hospice a doctor must certify that the patient is terminally ill with a life expectancy of six months or less, and the primary caregiver must agree and sign a statement. It can be difficult to decide when hospice is appropriate for Alzheimer’s and dementia patients because of how slowly the disease progresses. However, having a conversation with your loved one before things progress too far is important. This sets up expectations with your loved one’s care team and the rest of the family so once the serious conversation starts everyone is on the same page.
As we just discussed, hospice care is not only for the patient but for their loved ones as well. Many times, according to a study in the Journal of American Geriatrics Society, families of loved ones with end-stage Alzheimer’s disease don’t receive grief or bereavement support if they don’t elect hospice care. It’s important to consider that when making the choice for your loved one.
Important considerations for choosing hospice providers
Most hospice care is provided where the patient calls home- personal residences, assisted living facilities or skilled nursing homes. When you’re looking into hospice services for a loved one with Alzheimer’s or dementia, it is recommended that you meet with the hospice provider to find out what services they offer. Do they have staff with specialized training in dementia care? Where would they provide respite care should you need a break for your caregiving duties?
If you are looking to move a loved one into a facility for additional support, you want to ensure hospice services are available to residents of the facility. Make sure to ask if your current hospice provider can continue to care for your loved one once they move in.
It’s also important to discuss with other caregivers and loved ones what needs are most important in making the decision. This way when you’re meeting with either a hospice provider or staff at residential facilities you can ask direct, informed questions on how they can meet those needs.
You should also consider things like if the facility is Medicare-certified so costs are kept down, if they offer in-home care for an extra level of comfort, or if they have specific memory care experts on the team. That last question could be crucial. Not every facility has experience with dementia-specific training, so it’s important to find one that does.
When meeting with a hospice provider it’s also important to, if possible, take a couple more loved ones with you. These are emotionally heavy conversations, and having someone there to support you can be helpful not only emotionally but also to fill in any gaps that may be missed.
Support is available
Caring for a loved one with Alzheimer’s or dementia is a difficult and life-altering thing. You want to provide everything you can to make their end of life as pleasant and comfortable as possible. Hospice care teams with experience in memory care can give you and your family the support and lift they need as they process this difficult time.
If you need further information, you can contact the Alzheimer’s Association or Heart to Heart Hospice. Heart to Heart Hospice helps with symptom management, medication management, verbal and nonverbal pain, and more. We also provide education and support for caregivers and bereavement and grief support. Caregivers don’t have to go through it alone.
