Deciding when hospice care is needed for someone with dementia can be hard. Dementia is a term used for a group of conditions that cause a decline in memory and other mental abilities, which can affect a person’s daily life. When thinking about hospice care for someone with dementia, it’s important to see if there are any treatments or changes that might help the person continue to live comfortably.
Hospice care is usually considered when treatments no longer improve the person’s terminal condition and their decline seems to be part of the end-of-life process. For example, if a person with dementia is losing weight, it may be a sign to consider hospice care. However, it’s important to figure out if the weight loss is because of the disease or if there are ways to address it.
Sometimes, a person with dementia may not eat because they’ve lost their appetite, which is common in this condition. In these cases, appetite stimulants might help since dementia can make it harder for a person to feel hungry. Other times, the person may have trouble using utensils or may need help eating. Offering simpler foods, like finger foods or sandwiches, may help. If needed, caregivers may need to assist with feeding if the person is unable to do it on their own.
Deciding whether hospice care is needed for someone with dementia involves figuring out if there are still things that can be done to improve their comfort or if hospice care is the best choice for them.
Are There Other Signs to Look for with Dementia?
With dementia, it can be tricky to know when hospice care is needed because having dementia alone doesn’t automatically qualify someone for hospice. There are tools, like the F.A.S.T. scale, that help assess whether someone may need hospice care. This scale looks at things like whether the person:
- has trouble speaking more than a few words
- needs help with daily activities
- can’t maintain their weight
- or has difficulty moving around.
If you notice a steady decline in these areas, it might be time to consider hospice care.
Most people with dementia don’t die directly from the condition itself. Instead, they often pass away from complications related to dementia, like trouble swallowing, or developing pneumonia. Recurrent infections or pneumonia can be signs that it’s time to think about hospice care.
How Often Do People with Dementia Receive Hospice Care? Is That Common?
Neurological conditions, like dementia, are among the top 10 reasons people sign on to hospice care. According to the National Institutes of Health (NIH), nearly half of all older adults receiving hospice care have dementia. People with dementia now make up one of the fastest-growing groups of hospice patients and account for almost half of all hospice enrollments.
How Do You Recommend a Family Approach the Conversation About Hospice Care for a Loved One?
Talking about hospice with a loved one in the later stages of dementia can be difficult. If someone is at the point where they meet the criteria for hospice, they might not be able to take part in the decision-making process. Often, the decision falls to the family, which can be really tough.
“Families may struggle with the feeling that choosing hospice means they are ‘giving up,’” said Jamie LaLonde, Angela Hospice President & CEO. “We try to reframe that conversation by saying, ‘You’re not giving up, you’re making a supportive choice based on what’s happening with your loved one.’”
Many people see hospice as giving up, but it’s actually a treatment option, just not one that tries to cure the disease. Dementia is a progressive disease, and there is no cure. With hospice, the goal is to provide the highest quality of life for the patient.
“When working with families, I often ask, ‘What’s your goal for your loved one?’ Most families respond with, ‘We want them to be comfortable.’ This helps align their goals with the goals of hospice care,” Jamie explained. “I also ask questions like, ‘What’s the best way to get to that shared goal?’ and ‘What does being comfortable look like to you?’ Many families focus on non-medical aspects, such as wanting their loved one to feel happy, safe, and loved. Hospice care can provide this kind of support, ensuring comfort and dignity in the final stages.”
Angela Hospice helps not only the patient, but also the family and caregivers. It offers education, emotional support, and assistance in preparing for the end-of-life process.
What Are the Benefits for the Patient and Family When a Loved One with Dementia is on Hospice?
People with dementia often enter hospice care because of the physical symptoms of their decline. This may include not eating well, losing weight, needing more help with daily care, and experiencing incontinence. These issues can lead to other problems, like pressure sores (wounds) or joint stiffness. The hospice team is skilled at managing these discomforts and providing pain relief to help the person feel more comfortable.
Often, people with dementia can’t clearly communicate when they’re in pain, but the hospice team can perform specific assessments to recognize signs of pain and treat them appropriately. This helps ensure that the patient’s pain is managed, even if they can’t express it.
Social workers are also an important part of the hospice team. They can help with practical matters, such as funeral planning, and also support the family through the emotional challenges of caregiving.
Grief is not only something that happens after death. With dementia, families experience what’s called anticipatory grief—mourning the person as they slowly lose their abilities. This is a unique and difficult kind of grief because families are often losing their loved one in stages, which can make the process of saying goodbye even harder.
Families may also feel a lot of guilt. They might have moments where they think, “My loved one doesn’t have much quality of life, and I just wish they would pass away to stop their suffering.” Then, they may feel shocked by these thoughts, thinking, “How could I wish for my loved one to die?” Hospice can help families navigate these complicated emotions, offering support and understanding during a very difficult time.
Emotional Challenges Families Face When Considering Hospice Care for a Loved One with Dementia
Making the decision to enroll a loved one with dementia into hospice care can be incredibly difficult for families. It often feels like giving up, but it’s important to remember that hospice isn’t about giving up—it’s about shifting the focus from trying to extend life to improving the quality of life for the patient during their final stages. The goal is comfort and support, not treatment that aims to cure or prolong life.
Sometimes family members have unrealistic expectations about what their loved one can still do. For example, a 98-year-old woman with dementia had a daughter who insisted that her mother keep trying to stay active, despite her frailty. Instead of focusing on things that brought her mother joy, like spending time outside, the daughter pursued unrealistic goals, which made caregiving more difficult. This situation shows how challenging it can be when expectations aren’t adjusted to meet the person’s current abilities.
The emotional struggle of letting go is another challenge. In one example, a wife was caring for her husband with early-onset dementia. Despite his severe decline, she was determined to keep him alive, hoping for a cure that would never come. She struggled with whether to continue aggressive treatments or consider hospice care. This emotional turmoil is common, as families often have difficulty accepting the reality of the disease and the limitations it brings.
Family dynamics can also affect how a family approaches caregiving. For example, “I worked with a woman whose mother had a history of neglect,” Jamie shared. “The daughter was angry when the hospice team formed a positive relationship with her mother, who had never truly cared for her. Over time, we learned that the daughter’s anger stemmed from feeling responsible for a mother who had never been a nurturing figure in her life. This complicated family dynamic made caregiving more emotionally charged and challenging, but understanding this context helped us better support both the patient and her family.”
These stories highlight just a few of the emotional challenges that can arise when making decisions about hospice care for someone with dementia. Hospice care helps families navigate these complicated feelings by providing not only medical support but also emotional guidance during an incredibly difficult time.
If your loved one has dementia and you’re struggling with whether hospice care could be appropriate, our team can help determine whether your loved one qualifies for hospice services. Complete our contact form to learn more, or call our Patient Access Center at 866.464.7810.
Resources:
Harrison, K. L., Cenzer, I., Ankuda, C. K., Hunt, L. J., & Aldridge, M. D. (2022). Hospice Improves Care Quality For Older Adults With Dementia In Their Last Month Of Life. Health affairs (Project Hope), 41(6), 821–830. https://doi.org/10.1377/hlthaff.2021.01985
National Alliance for Care at Home. (2024, September). NHPCO Facts and Figures: 2024 Edition. https://allianceforcareathome.org/wp-content/uploads/2024/09/Facts-Figures-2024_FINAL.pdf
