Caring for a Person with Dementia at the End of Life

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Unfortunately, having dementia does not prevent a person from acquiring other illnesses. Not only must dementia caregivers manage changes in memory and behavior, but they are also faced with decisions regarding treatment of additional medical concerns, such as heart conditions, breathing problems, digestive issues, diabetes, pain, infections, falls, broken bones and even cancer. These illnesses can be especially difficult to manage because the person with dementia may have trouble understanding their condition and the treatments they require.

As dementia progresses and concurrent medical problems become more difficult to manage, tough questions can arise. When does the burden of aggressive treatment outweigh a patient’s comfort and quality of life? Are uncomfortable screening tests like colonoscopies or mammograms still necessary?

I have worked with many families caring for loved ones with dementia and other health issues. When weighing treatment options, the impact of dementia must be considered. I suggest that caregivers use the following framework to navigate complicated health care decisions for their loved ones.

  1. Know Your Loved One’s Health Care Goals
    Ideally, you would be able to discuss medical decisions with your loved one and reach a conclusion together, but moderate to severe dementia typically prevents this. If you can, step back and think about the big picture. What has your family member expressed about their wishes for the future? Is their main priority maintaining a high quality of life? What does quality of life mean to them? Is it freedom from pain or worry? Does it mean staying out of the hospital? Consult medical/legal documents like their living will or advance directive for guidance, and use these questions to help you navigate the next few steps.
    It can be difficult to determine when to involve an incompetent loved one in decisions about their own care. In some cases, a patient may have a lucid moment and be able to give their input, but in others, discussing surgery or a new diagnosis will only upset them. This is why it is crucial to discuss health care goals and wishes for end-of-life care long before they need to be acted on.
  2. Ask Questions Related to the Goals of Care
    When a treatment, medication or test is proposed, talk with your loved one’s doctor about how this procedure or change in care meshes with their goals of care. Will the test or treatment improve your family member’s functioning or reduce symptoms like pain? Dementia caregivers face many difficult care decisions when it comes to preventative screenings, like mammograms and colonoscopies. Would these and other tests be uncomfortable and difficult for the patient to tolerate? If cancer was found, would aggressive treatment, such as chemotherapy or radiation, be pursued?
    Surgeries and hospitalization can be problematic as well. If your loved one fell and required corrective surgery or a joint replacement, would the procedure reduce pain? Would it improve their mobility, or are they already unable to walk? Will they require hospitalization and/or rehabilitation? What is the risk of increased confusion after surgery? Would they be able to participate in necessary physical therapy or is recovery unlikely? Anesthesia, hospitalization and intense treatment and rehabilitation programs can be very disorienting and confusing for dementia patients. They can even speed up the progression of a loved one’s cognitive decline, so it is important to consider the possibilities very carefully.
  3. Learn About Alternative Types of Care
    Palliative care is a branch of medicine that focuses on comfort, symptom control and maximizing one’s quality of life and functional ability, rather than focusing exclusively on curative treatment. It is patient- and family-centered medicine that provides relief from all kinds suffering, including the physical, mental, social and spiritual aspects of an illness. A palliative approach is appropriate for anyone who is dealing with a serious condition that is expected to worsen.
    Palliative medicine should not be equated with “giving up.” It treats symptoms while minimizing painful tests and procedures and disruptive hospital stays. Furthermore, palliative medicine coordinates with the rest of one’s health care team, it does not replace it. Patients can receive both curative and palliative treatments simultaneously.
    Hospice care is also an option for dementia caregivers to consider. Hospice is a type of palliative care that focuses solely on providing comfort for patients who have a life expectancy of six months or less. Like traditional palliative care, patients in hospice programs receive care meant to minimize symptoms and promote quality of life, but this is provided in lieu of curative treatments. Both hospice and traditional palliative care play an important role in end-of-life decisions for individuals with dementia.
  4. Advocate for Your Loved One
    Remind your loved one’s health care provider(s) to consider the impact of dementia on any proposed treatments and vice versa. If their recommendations don’t align with your loved one’s healthcare goals, then advocate for an alternative approach and work with the team to devise a new plan of care. A geriatric care manager (GCM) can be an invaluable asset on one’s care team. They can assist with communication and coordination amongst team members, provide guidance, and act as an extra advocate for your loved one and your family.

Dr. Susan Maixner is a clinical assistant professor of psychiatry and director of the University of Michigan Geriatric Psychiatry Clinic.

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9 Comments

Thank you for this excellent, informative article on palliative care. I am a hospice chaplain and address these issues each day with my patients and their families. I especially look forward to your next article regarding hospice.

One of the most difficult issues that we face is that of families who insist on force-feeding their loved ones, believing this to be in their best interest. I look forward to reading your counsel.
Mother in law was recently in hospital after syncope. She is 95 and has severe aortic stenosis and staged by neuro/psych eval as severe Alzheimer's. A palliative care nurse was excellent and supportive in guiding us to begin hospice. She stabilized and was taken off after only a month. It seems these days there is a trend more geared for comfort measures. Her quality of life has diminshed, and she would be appalled to know some of the things she now does in public. She was a teacher and head of department. There are many students of hers still in her area. Her "image" of things being perfect was foremost important to her. My MIL's advanced medical directive states if incompetent, she does not want antibiotics. Her hygiene problem causes UTI's. It is a very hard decision to make. There are not easy anwsers.
Thank you !! This was very helpful!