Managing Hospice Care for Someone with Dementia
Hospice care can be one of the greatest gifts you could give a loved one with dementia who's nearing the end of their life. The goals of hospice care include supporting comfort, dignity, and quality of life for those who are close to death.
By Laura Herman, Dementia and Eldercare Professional
Hospice care can be one of the greatest gifts you could give a loved one with dementia who's nearing the end of their life. The goals of hospice care include supporting comfort, dignity, and quality of life for those who are close to death.
Comfort, dignity, and quality of life are at a premium for people living with dementia.
Research shows that hospice dementia care can:
- Reduce challenging behaviors
- Eliminate unnecessary medications
- Decrease hospitalizations and emergency department visits
- Significantly increase family caregiver satisfaction
- Reduce caregiver burden
If you’re considering hospice care for a loved one with dementia, there are just a couple things to know.
First, estimating life expectancy can be difficult. This can complicate the hospice admission process a little bit, but the profound benefits make it well worth any extra effort. Second, it’s important to find a hospice provider that understands how people with advanced dementia communicate.
Let’s take a closer look at managing hospice care for a loved one with dementia.
Differences in Hospice Care for People with Advanced Dementia
Hospice services are customized to each patient’s specific needs, and that’s no different just because someone has dementia. However, due to the difficulty of predicting life expectancy, there are some differences in the average length of hospice care dementia patients receive and their admission process.
Average Length of Hospice Care for Dementia Patients
People without dementia receive, on average, a little over two months of hospice care. Those with dementia average a little more – around three and a half months – but most are enrolled for either less than a week or over six months. A higher than average number of people with dementia graduate from hospice service after stabilizing as well.
Dementia Hospice Life Expectancy
Hospice is available for individuals who are believed to be within the last six months of life. However, it can be hard to predict how much time remains for a person with dementia.
Dementia is not a disease. It’s a general term that refers to the loss of cognitive abilities such as thinking, judgment, or memory. Dementia can be caused by a number of causes, including diseases such as Alzheimer’s, Parkinson’s, Huntington’s, and Lewy Body, as well as conditions such as strokes.
If your loved one’s dementia is a result of Parkinson's, they’re at high risk for aspiration pneumonia, which can occur suddenly as their swallowing difficulties increase. If your loved one has Lewy Body they may be distraught by disturbing hallucinations or delusions that interfere with their daily life and emotional wellbeing. Older adults with a history of strokes are at higher risk for more. A stroke can alter a person’s entire life in a matter of seconds.
It’s hard to predict dementia life expectancy. There are just too many factors that influence how a person with dementia is doing. Days or weeks at a time can go well, followed by difficult periods with no clear cause.
For example, a person with dementia may stop eating, which can lead to weight loss, dehydration, weakness, falls, pain, pain medication, constipation, agitation, more medication, and a continuous downward cycle from there.
Lack of appetite and decreasing strength could be signs the person is dying, but they could also potentially result from other causes, such as medication irritating the stomach. Due to their dementia, they may be unable to communicate that their stomach is upset. If the medication was stopped, the person might regain their appetite and their strength.
Pain, constipation, and other sources of discomfort are major sources of agitation and behavioral challenges in people with dementia. Getting the person comfortable can make an enormous difference in their well-being, behavior, ability to function, quality of life, and holistic health.
If your loved one’s condition stabilizes to the point they’re no longer thought to be within six months of death, their hospice team will continue to support them until the end of the certification period (each lasts 60 or 90 days). After that, they’ll no longer be on hospice. The team will ensure you’re set up with what you need to keep them stable. Weeks, months, or years later, when your loved one again appears to be within six months of death, they can restart service. Often, you’ll be able to pick right up with the same team of professionals you know and trust.
Hospice Alzheimer’s and Dementia Admission Process
Because of the difficulty in predicting life expectancy, the hospice admission process can be a little tricky at times. Hospice requirements for dementia eligibility guide the process.
Hospice Criteria for Dementia
Medicare has set forth special criteria for helping hospice professionals determine whether a person with a cognitive-impairing illness may be eligible for hospice. There are other things that the hospice admission team looks for as well, but these give you an idea of whether your loved one may qualify.
Medicare guidelines for hospice dementia admission include
All of the following:
- Unable to walk, dress or bathe without help
- Incontinence of bladder or bowel
- Unable to communicate meaningfully
One of the following within the past year:
- Aspiration pneumonia
- Significant pressure ulcers
- Recurrent fever
- Significant weight loss (10% of body weight)
However, situations are not always cut and dried. Decisions boil down to the physicians’ judgment after they look at the big picture. The hospice admission team will converse with you to help paint that picture. They’ll consider other severe health conditions – like diabetes, heart, kidney, or lung disease – that might be present, and how dementia might affect them. Overall, they’re looking at how likely is it that this person will be alive in six months?
Palliative Care for Dementia Patients
If your loved one isn’t ready for hospice, consider palliative care support instead. Palliative care also focuses on supporting comfort but it’s not limited to the last six months of life.
Palliative care Alzheimer’s and dementia support provides access to a team of professionals who can provide oversight, support, and guidance for a significant difference in your family caregiving experience and your loved one’s health, wellness, and happiness. Because insurance usually covers the cost of palliative care, there's little or no out-of-pocket expense.
Is it time for hospice, or is palliative care more appropriate? Explore the differences between hospice and palliative care.
Find an Experienced Dementia Hospice Provider
If you’re caring for a loved one with dementia at home, it’s important to find a hospice team with plenty of experience in dementia care. Not all agencies frequently provide hospice care for Alzheimer's patients. Because dementia has a tendency to affect communication, it’s essential to work with a team who’s skilled at understanding behavioral and non-verbal communication.
For example, pain is one of the biggest contributors to challenging behaviors in people with dementia. However, people – even healthcare professionals – who aren’t familiar with dementia care often miss signs of pain, so it often goes undertreated in people with dementia. Treating the pain can reduce behaviors caused by them. It’s worth taking the time to find a provider who knows dementia inside and out.
Questions to Ask the Hospice Agency Regarding Dementia Care
- What criteria will you use to determine if my loved one will qualify for hospice?
- How much experience do you have working with people with dementia?
- How can you determine what my loved one needs if they can’t tell you?
- How do you handle difficult dementia-related behaviors?
- Will my loved one be able to remain at home? When or why would they need to go to a facility for care? Who would make that decision? Which facility might they go to?
- What kind of respite services, caregiver support, or special resources could you provide for my loved one and our family?
Is your loved one hurting and unable to tell you? Learn to identify non-verbal signs of pain in a loved one.
Frequently Asked Questions: End of Life Care Dementia Support
People often have questions about how hospice care works for those with dementia. Here are some of the most pressing.
How do I know if it’s time for hospice for my loved one with dementia?
It may be time to consider hospice care if your loved one can’t walk, dress, bathe, toilet, and feed themself, especially if they also have:
- Significant weight loss
- Frequent hospitalizations or trips to the emergency room
- Inability to communicate or smile
- Persistent pain or physical/emotional discomfort
Your loved one’s specific signs may differ somewhat. If you’re wondering about hospice, ask your loved one’s doctor for their opinion.
Should I send my loved one to the hospital or choose hospice?
Hospitalization can be very traumatic and uncomfortable for people with dementia, and hospitalizations tend to become more frequent toward the end of life. It’s important to consider their true costs – in terms of comfort and quality of life – and your loved one’s wishes for their final chapter. How much of it do they want to spend in the hospital? Would they prefer to have less time – if it was more peaceful and comfortable – in their own home versus more time in a hospital undergoing uncomfortable procedures? Ideally, your loved one has discussed their wishes ahead of time with you and the family and has documented them in an advanced directive document.
Unsure how to bring up the topic of hospice? Consider these ways to start the conversation.
What kinds of changes do caregivers have to make when transitioning from daily care to hospice care with regard to advanced dementia?
Nothing automatically changes when hospice comes on board. Don’t worry – they won’t swoop in, take over and mix up everything without your input. If your loved one is in crisis, they’ll work with you, guide you and help enact any changes you agree on.
If you’ve been providing daily care to your loved one, bringing hospice on board won’t change that. Hospice can provide a little additional caregiving assistance, but it’s generally limited to a couple of visits per week for bathing or other such activities. They can also provide some volunteer assistance for short periods of respite or companionship.
If your loved one has a crisis that requires prolonged care from licensed nurses they can accommodate that until the situation is under control, or can help you move your loved one to a facility if necessary.
How does memory care figure into hospice care?
Hospice care is personalized to each patient's needs based on their health conditions and unique life circumstances. If they live in a memory care facility, the hospice team will coordinate with facility staff as well as with the family, to ensure everyone is on the same page.
Hospice enhances the care facility staff provide with:
- Specialized oversight for end-of-life issues
- Quicker, easier access to medications and equipment
- Additional resources, such as volunteers, and sometimes massage, music, or other services
Additionally, being on hospice clarifies that comfort and quality of life are priorities, which can be really helpful when there are multiple people in the picture.
What kinds of therapies are added to hospice care when managing advanced dementia?
Many therapies have shown promise in dementia care that can be incorporated into your loved one’s hospice care plan. Examples include aromatherapy, music therapy, weighted blankets, massage, reminiscing therapy, doll therapy, art therapy, and pet therapy. Talk to the hospice team with questions, requests, and suggestions about personalizing your loved one’s end of life care plan.
What will hospice do about dementia safety concerns like wandering or accidents?
The hospice team will help you address any safety concerns that arise. If unsafe wandering, accidents, or other concerns can’t be handled at home, the hospice team can help figure out how to get the support you need, whether that means hiring home care or turning to a facility for short-term respite or longer-term care.
Does someone have to go straight into continuous hospice care (Level 2) because of their dementia?
No, continuous home care is for short-term crisis care only. If you've been supporting your loved one at home all along, hospice will enhance the care you’ve been providing.
Learn more about the four levels of hospice care.
Hospice Holds Many Benefits for Individuals with Advanced Dementia
Most people report they wish they’d started hospice sooner. Hospice can be tremendously beneficial for people with advanced dementia. When their comfort is supported and their needs are met they feel calmer, happier, and more at peace, and behaviors become less challenging. It’s important to find a hospice provider who understands the unique behavioral communication inherent to dementia.
It can be tough to estimate how much time remains for a loved one with dementia, but you don’t have to be sure. If you suspect that your loved one might be nearing the end, or are struggling to keep them physically and emotionally comfortable, talk to their doctor for advice. If it isn’t time for hospice, look into palliative care in the meantime. Support is available, and it can make a big difference in your loved one’s quality of life, and your caregiving journey.
Sources
- Bursack, Carol Bradley. “Hospice Care for Dementia: When Is It Time?” AgingCare, 15 March 2022, www.agingcare.com/articles/hospice-care-for-advanced-dementia-when-is-it-time-200580.htm.
- Klein, Amy S. “Hospice Care for Patients with Dementia.” Arizona Center on Aging, March 2019, www.uofazcenteronaging.com/care-sheet/providers/hospice-care-patients-dementia.
- De Vleminck, Aline, and Morrison, R. Sean, and Meier, Diane E., and Aldridge, Melissa D. “Hospice Care for Patients With Dementia in the United States: A Longitudinal Cohort Study.” Journal of the American Medical Directors Association, 01 July 2018, www.ncbi.nlm.nih.gov/pmc/articles/PMC5966338/#:~:text=The%20mean%20length%20of%20stay,primary%20diagnosis%20other%20than%20dementia.
- Sternberg, Shelley A., et al. “Home Hospice for Older People with Advanced Dementia: a Pilot Project.” Israel Journal of Health Policy Research, 06 May 2019, ijhpr.biomedcentral.com/articles/10.1186/s13584-019-0304-x.
