What are the Last Stages of Dementia Before Death?

Patients who have Alzheimer’s disease or non-Alzheimer’s dementia experience memory loss and ongoing functional decline that can span as few as four years and as many as 20, depending on their specific diagnosis.

Understanding the signs and symptoms of dying helps family members and caregivers provide the most compassionate care to a loved one who is in the final stages of Alzheimer’s disease.

Symptoms in the Final Stages of Alzheimer’s Disease

While the final stages of dying from Alzheimer’s disease can be unpredictable and symptoms may vary from patient to patient, specific end-of-life patterns are apparent that help caregivers cope with the process and know what to expect.

Initial End-of-Life Symptoms: Months and Weeks Before Death

• Recurring infections: Talk to your hospice physician about possible palliative treatments or comfort measures
• Multi-symptom complications: Talk to your hospice physician/nurse about possible palliative solutions, and talk to your social worker about advance directives and patient preferences for end-of-life care
• Loss of interest in food; decreased appetite and weight loss; less able to tolerate food: Talk to your hospice team about alternative ways of nurturing someone who is no longer interested in eating or drinking
• Decreased strength, stamina or stability: Talk to your hospice team about equipment or safety measures that can keep your loved one safe and comfortable
• Increased confusion or agitation: Talk to your hospice team about pharmacological and non-pharmacologic solutions for managing confusion, agitation and behavioral changes
• Loss of control of bowel or bladder: Talk to your hospice team about personal hygiene and supplies (incontinent supplies, disposable underpads)

Symptoms of Active Dying From Alzheimer’s Disease: Days and Hours Before Death

Consider notifying your hospice team when your loved one enters the active dying stages. Team members and a volunteer are available to join the family at the bedside to explain what is happening and provide support.

• Dry mouth: Keep lips and mouth moist with lip balm, ice chips or moistened swabs
• Restlessness: Talk to your hospice team about solutions for reducing external stimulation and keeping your loved one calm and comfortable (e.g., gentle conversation, reading, soft music, reassuring messages of love and nearness)
• Labored breathing or shortness of breath (so-called “death rattle”): Talk to your hospice team about palliative and comfort measures that can ease breathing or reduce secretions (e.g., raise the head of the bed or prop up a loved one with pillows; open a window or use a fan to increase air circulation; turn the patient onto one side to allow secretions to drain)
• Fever or perspiration: Use cool wash cloths to soothe your loved one; talk to your hospice team about other comfort measures
• Darker urine/reduced urine output: Signs that bodily processes are shutting down
• Purple mottling of the skin: Keep your loved one comfortable, keep the skin clean and dry, use only gentle touch and light covers; talk to your hospice team about other comfort solutions
• Twitching: Keep your loved one comfortable, hold a hand gently and provide verbal reassurances

Other End-of-Life Signs and Complications for Alzheimer’s Disease

People with Alzheimer’s disease or non-Alzheimer’s dementia may have underlying illnesses that accompany their memory loss and functional decline. These illnesses, which can hasten or complicate death, include aspiration pneumonia (inhaling fluids/secretions into the lungs because of inability to swallow), urinary tract infections, sepsis, stage 3-4 pressure ulcers, and recurring fever after antibiotics.

Likewise, underlying chronic diseases can significantly impair an Alzheimer’s patient’s health and functional abilities; these include severe heart disease, advanced lung disease, diabetes mellitus, kidney failure and cancer. As patients are dying, they may experience other signs or symptoms that are not related to Alzheimer’s disease.

Bereavement Support for Loved Ones

After a loved one dies, a VITAS bereavement specialist is available for up to 13 months to provide support to family members and caregivers as they work through their grief. Support includes ongoing contact, support groups, grief education and one-on-one visits. Hospice is always available to those who have experienced the death of a loved one.

Questions About Hospice Care?

Whether you are a first-time or veteran caregiver, the responsibility of caring for and watching someone die from a serious, progressive disease can be overwhelming — but with VITAS, you’re not alone. Find helpful information by downloading the VITAS hospice discussion guide or exploring topics and information for caregivers.

If you’re a physician treating a patient who may be eligible for hospice, fill out our simple online referral form. A VITAS admissions specialist will follow up to discuss a consultation, evaluation or seamless transition to hospice care.