As your loved one approaches the final stage of Alzheimer’s disease, take the next steps by creating a care plan and researching hospice options.
Taking care of someone with Alzheimer’s disease is difficult, logistically and emotionally, especially as the disease approaches its final stages.
Many Alzheimer’s caregivers report experiencing high levels of stress. As the disease progresses, the burden on caregivers increases as well.
Caregivers can take steps early to prepare for when it’s time to navigate the later stages of Alzheimer’s disease with their loved one. Experts say it’s helpful to understand the disease trajectory, create a care plan that accounts for future needs, and know what to expect if and when your loved one enters hospice.
The clinical stages of Alzheimer’s disease are often categorized as mild, moderate, and severe.
Someone experiencing severe cognitive decline is typically unable to recognize faces and may struggle to speak beyond the occasional word or phrase. They need assistance with nearly all aspects of daily life. However, keep in mind that these stages do not look the same for every individual.
Preparing for the end stages of Alzheimer’s disease
Some people with dementia progress through the stages faster than others. Dr. Joseph Black, founder and chief neuropsychologist at Idaho Neuropsychology, said that factors like environmental disruption, physical inactivity, and social isolation can accelerate decline.
“At some point, living alone is really no longer a reasonable option,” Teepa Snow, an occupational therapist and dementia care expert, told Being Patient. “The two options: either bring support in, or you go find support somewhere else by being somewhere else.”
Ideally, caregivers should discuss this topic with their loved one in the earlier stages of the disease. Before making a decision, consider the feasibility of supporting them at home. How safe are they? What is their quality of life? Is there a high-quality nursing home nearby?
The goal is to develop a care plan that meets current needs while also anticipating future changes. Consider how factors like relationships, physical and mental health, environment, and past routines and responsibilities come into play.
Finally, this is also a good time to plan for end-of-life arrangements.
Understanding how to navigate hospice
When there’s severe functional decline — such as an inability to move independently — it may be time to consider hospice care for Alzheimer’s.
Nina Pflumm Herndon, executive director and founder of Sage Eldercare Solutions, recommends requesting a hospice consultation if you aren’t sure of the next best step.
“They will come to the home to assess the client to determine eligibility and help families understand services offered,” she said. “For people who aren’t yet eligible, many hospices also run palliative or ‘pre-hospice’ programs that offer symptom management and access to members of their interdisciplinary team.”
Dr. Maribeth Gallagher, director of Arizona’s Hospice of the Valley dementia program, told Being Patient that deciding the right time hospice care for a loved one with dementia can often be difficult and stressful.
“People tend to think that palliative care is hospice care, and that’s a myth,” she said, adding that palliative care can be appropriate at any stage. “Palliative care is specialty care that focuses on symptom management and comfort in its many forms: body, mind, and spirit.”
Hospice care is “an even more specialized type of palliative care,” Gallagher said, typically for the last six months of life. She recommended relying on the guidance of your provider to determine the right timing and program.
“The first thing I would do is go to your provider,” Gallagher said. “Whoever you’ve established a relationship with—someone you trust—ask them, because they’re likely familiar with these situations. You’re not the only family facing these challenges.”
In addition to providing comfort and dignity during the last months of life, hospice care for Alzheimer’s is also designed to support the caregiver and families.
“Hospice also explicitly supports patients and family caregivers by providing hands-on nursing, some support with personal care, social workers who can provide education and coordination, spiritual care, and bereavement counseling after death,” Herndon added.
Hospice can take place either at home or in a nursing home. “Aging in place” is often preferable and may help support quality of life, she said. If the person with Alzheimer’s has complex medical needs or requires around-the-clock care that family cannot provide without risking burnout, a facility-based hospice may be the better option.
Medicare Part A typically covers hospice for Alzheimer’s disease, as do Medicaid and many private insurance plans. Your loved one’s doctor can make a referral to initiate hospice care, which involves a team of healthcare professionals.
Medical interventions
A doctor can also help families understand what medication options are available to improve comfort. At some point, you’ll also need to discuss when medical interventions should be limited or withdrawn, said Black of Idaho Neuropsychology.
Medical interventions for Alzheimer’s may be limited at first, but as the disease progresses, Black said, they can become more intensive and “may become misaligned with what the person would have wanted. The balance of quality of life versus the benefit of medical intervention starts to change.”
As a caregiver, it’s easy to feel overwhelmed when making healthcare decisions for a loved one who can no longer do so themselves. Black recommends having advance care planning conversations early, including discussions about:
The person’s values and preferences around end-of-life care
Which medical interventions they would want—and which they would not
The role they want family members to play as care needs increase
The final days
In the final days or hours of life, you might notice that your loved one is sleeping more or eating less. Their breathing may become irregular. To help provide comfort and dignity, Herndon said, “Honor who they are and consider what would have brought them meaning and connection when they were well.”
This may include:
Talking about shared memories
Telling them what they mean to you
Creating an environment that reflects their preferences
Considering who they want to see, noise levels, and activities
Looking for signs of discomfort
Reporting symptoms to hospice
After your loved one has passed, Herndon recommended seeking out bereavement care, which many families don’t realize hospice provides. “[It includes] follow-up calls, grief counseling, support groups, and referrals that continue for a year after death,” she said. “Hospice social workers can also provide practical guidance with death certificates, paperwork, funeral planning, and referrals to legal and financial resources.”
And allow yourself to grieve as your loved one moves through the stages of Alzheimer’s. “Recognize that the grieving process often begins months or even years before death,” Black said. “The flip side of grief is gratitude—creating space to grieve can also make room for gratitude.”
