Caring for End-Stage Dementia
Dementia is the loss of brain function that occurs with certain brain conditions.
It affects memory and makes it harder for patients to think clearly and
communicate. As dementia slowly worsens, patients become increasingly
disabled. Over time, they lose their ability to care for themselves. If
your loved one has now progressed to end-stage (advanced) dementia, it
may help to know what to expect and plan for what lies ahead.
Understanding End-Stage Dementia
Symptoms are different for each patient. But, in general, dementia has
three basic stages. Each stage can last a few months to years. End-stage
dementia is the last, and often most stressful, stage for both patients
and families. Once this point is reached, your loved one's brain function
will have severely declined. This will affect how the rest of your loved
one's body functions. With end-stage dementia, your loved one may
Recognize family members and friends.
Reason or have sound judgment.
Speak or understand language.
Have bowel and bladder control.
Eat or swallow properly.
Walk properly. He or she may need a wheelchair or be bed-bound.
Perform normal tasks of daily living. He or she will need constant care.
Revisiting Your Loved One's Care Plan
Because of the extent of the physical and mental changes that can occur
with end-stage dementia, your loved one's goals of care and treatment
plan may need to change. Your loved one's doctor and health care team
can help guide you through this process. When meeting with the team, you
and others involved in your loved one's care may want to ask:
How much longer does our loved one have to live?
How can symptoms be managed at this time?
What treatments might be helpful?
What are the risks and benefits of these treatments?
How will these treatments help with overall health and comfort?
These questions may lead to further discussions about end-of-life care.
Although these discussions can be difficult, remember that the goal is
to provide the best care and quality of life for your loved one. Think
about conversations you may have shared about the kind of treatments your
loved one wants at the end of life. Consider their personal values or
faith. Also ask for advice from those who share those values.
Considering Care and Placement Options
With end-stage dementia, your loved one's caregiving needs will greatly
increase. If you are still caring for your loved one at home, you may
want to explore other care options at this time. These may include:
Private sitter services. A private sitter is a special type of caregiver. This person's main
job is to monitor and keep the patient company. Sitter services are sometimes
covered by long-term care insurance plans.
Placement in a nursing home or skilled nursing facility. This type of facility assists with tasks of daily living. It also provides
constant medical care. Trained doctors, skilled nurses, and therapists
are onsite to assist with care.
Hospice care. This is end-of-life care that can be done in a skilled nursing facility,
hospice center, or at home. Hospice care focuses on ensuring comfort and
enhancing quality of life in the time your loved one has left. It also
provides physical, emotional, and spiritual support for both patients
Deciding whether to move your loved one to a facility or to end-of-life
care can be upsetting. But know that you're not alone in this process.
Your loved one's health care team can help address your questions
and concerns. You can also seek advice from a social worker, spiritual
advisor, or attorney.
Coping with your loved one's condition can wear you down over time.
Grief, anger, fear, and worry-these are all normal emotions. Rather than
dealing with your emotions alone, it may help to reach out to others.
Talking to other family members and friends may help. Joining a support
group for families and caregivers of loved ones with dementia may also
help. You can seek support from your loved one's health care team
as well. You can also contact your county health department to find other
resources within your community.