“I guess I am just dreading facing the finality of ‘hospice,’ but I think it is getting time. The fact that he is still mobile makes it sometimes seem like it’s not as bad as it is,” one myALZ team member shared. Knowing when to start hospice care for someone with Alzheimer’s disease can be complicated. Feeling unsure about when to reach out to hospice services is completely normal.

Though the decision may be difficult, many people whose family members received hospice care have found their hospice care team to be an invaluable resource. “I always knew I would use hospice when the time came, although I didn’t expect it to come so soon. The hospice nurse told me that I called them at exactly the right time because most people wait too long. I never could’ve managed those last six weeks without hospice,” one member wrote.

Deciding on hospice care involves thinking about both the needs of your loved one with Alzheimer’s and your own as their caregiver. Here’s a look at hospice care, including how to know if your loved one is ready and what kind of help hospice can provide.

What Is Hospice Care?

Hospice care provides medical care to people with terminal illnesses as well as support to their families. Hospice care services aim to manage pain and discomfort in the end-stage of disease — typically, the last six months of life. Your loved one’s care team may be made up of several healthcare providers and other specialists, including:

• Nurses
• Doctors
• Home health aides
• Counselors
• Social workers
• Clergy

Hospice professionals support people by providing medical care, medications, and medical equipment. In addition to medical care, hospice services may also include emotional and spiritual counseling, grief support, and respite care (caregiver relief).

Hospice providers can support people with Alzheimer’s in their homes, in nursing homes, or in designated hospice facilities. It’s common for a family caregiver to take part in care alongside hospice providers.

When To Consider Hospice

Alzheimer’s disease and other forms of dementia are common in hospice. General signs that it might be the right time for your loved one to get hospice care include the following:

• They need to visit their healthcare provider or hospital frequently, especially for infections.
• They have no appetite and are losing weight.
• They’re consistently restless or confused.
• They spend most of their time sleeping.

These signs suggest that your loved one may be in the final stages of dementia:

• They’re unable to speak more than a few words.
• They’re not able to do anything independently, including feeding, bathing, or dressing themselves.
• They’re unable to walk and must stay in bed.
• They have severe anxiety.

Meeting Hospice Criteria

Part of why it can be hard to tell when your loved one is ready for hospice is because of how it’s referred to as end-of-life care. “When we were discharged, the doctor suggested we start on hospice care. Admittedly, I thought we weren’t ready for that level of care. I, like many, thought it was for end of life, and I wasn’t ready to go there yet,” one myALZteam member wrote. However, hospice isn’t only for people in their last few days or weeks.

Hospice eligibility requires a referral from your doctor saying that you likely have six months or less to live. Making that call for someone with Alzheimer’s can be hard, though. Due to Alzheimer’s slow disease progression, it may not be obvious to a caregiver when to reach out for a hospice referral.

Qualifying for Hospice Through Insurance

Medicare, Medicaid, and private insurance companies will typically cover hospice services. However, your loved one will have to meet certain criteria first. For example, to be eligible for hospice coverage under Medicare, your loved one will have to:

• Have Medicare Part A
• Get a diagnosis of terminal illness with a life expectancy of less than six months from both their doctor and the hospice medical director
• Waive their right to have other medical services to treat their terminal illness and to receive hospice instead

There are also criteria specific to forms of dementia. To qualify for coverage, people with dementia typically need to be:

• Reliant on others for help using the toilet, bathing, grooming, walking, and transferring
• Unable to control their bowels or urine
• Unable to leave bed
• Mostly nonverbal
• Diagnosed with a terminal complication of dementia, such as weight loss or bed sores

These extra requirements, especially complications, can make qualifying difficult for people other than those with very advanced dementia. One member shared their struggle getting approved: “I had looked into this, and he doesn’t qualify for hospice at this time. … Being he’s still so young (68) and generally in good health, he doesn’t qualify. It’s unsafe for him and for me for him to be at home.”

Though you may encounter hurdles, members have stressed how important it is to not give up. “Looking back on my years of caring for my husband, there is one thing I would do differently and highly recommend. That is, do everything in my power to fight for hospice earlier. Primary doctors and neurologists have a say in this matter. The six-month rule is just a vague guide that makes you go away. Don’t. Ask again,” one member said.

Benefits of Hospice

Hospice care can be a helpful resource for people with late-stage dementia and their families. Hospice care teams are made up of different specialists who can provide comprehensive care.

How Hospice Can Help People With Alzheimer’s

The goal of hospice is to manage pain for the best quality of life in later stages of disease. To address physical and emotional needs, hospice dementia care often includes:

• Management of pain, nutrition, hydration, and other physical complications
• Coordination and delivery of medications as well as medical supplies and equipment
• Provision of resources for emotional and spiritual support
• Provision of in-home care or 24/7 care at an inpatient hospice facility if the person is not well enough to be at home

“Hospice was my biggest help during my husband’s final months. He was incontinent, so they supplied all the paper goods and bed pads, as well as someone showering him twice a week, a nurse coming once a week, and all the help I needed. We had them for six months before he passed. They were like family,” one myALZteam member shared.

How Hospice Can Support Families

Another benefit of hospice services is that they can provide support to the families of people with Alzheimer’s. Support services offered to families may include:

• Help with hard decisions that may be overwhelming
• Financial, emotional, and spiritual assistance
• Family caregiver training
• 24-hour access to a member of the hospice care team
• Respite care
• Bereavement services

“Pursuing hospice and receiving this help has been like a light switch flipping on,” one member wrote. “Having them walk alongside me as I help my husband has been so very helpful. I feel like I will survive caregiving and still have enough of me left to have a great next chapter.”

Finding Hospice Care

“I researched local hospices, selected one, called and requested a visit, and they reached out to my husband’s primary doctor to get the orders. In short, I encourage caregivers to go directly to the hospice folks for evaluation,” one member suggested.

Several organizations offer resources to help you locate hospice services, including:

• Alzheimer’s Association
• Hospice Foundation of America
• National Hospice Foundation
• National Alliance for Care at Home

Asking questions can help you assess whether a hospice provider will be the right fit for your loved one. For example, you might ask whether their team has cared for people with Alzheimer’s or if they have a 24-hour call line for questions or concerns. It’s important to find a hospice provider that you feel comfortable with.

One member explained that their biggest regret in dealing with hospice was not connecting with them sooner: “If I had to do anything over, I would have reached out to hospice earlier. In reality, it isn’t an acknowledgment of finality. It’s a new lease on the life you and your loved one have left. Once I was able to secure this godsend of a service, I was a better caregiver. If I can make only one suggestion to all caregivers here, especially those like me who cared for my husband at home, do everything in your power to get hospice service as early as you can.”

Talk With Others Who Understand

On myALZteam, the social network for people with Alzheimer’s disease and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with the condition.

Have you engaged hospice care for a loved one with Alzheimer’s? Share your experience in the comments below, or start a conversation by posting on your Activities page.