Late Stage and End-of-life Alzheimer’s Care: Final Stage Caregiving

Understanding late stage Alzheimer’s care needs

In the later phases of Alzheimer ’s disease (AD), it becomes evident that in spite of the best care, attention, and treatment, your loved one is approaching the end of life. At this stage, a patient can no longer communicate directly, is totally dependent for all personal care, and is generally confined to bed. Unable to recognize once cherished people and objects, or to verbally express basic requirements, the person with Alzheimer’s completely depends on sensitive caregivers to advocate, connect, and attend to her needs.

Many caregivers finally acknowledge their own needs for significant help. This period may last from a matter of months to three years, and calls for revised strategies, tough decisions, and an expanded team. Understanding and anticipating these changes provides a framework from which to proceed.

Patient and caregiver needs in late stage Alzheimer’s care

Practical care and assistance. Your loved one can no longer talk, sit, walk, eat, or make sense of the world. Routine activities, including bathing, feeding, toileting, dressing, and turning require total support and increased physical strength. Tasks are clear and prioritized, and can be supported by personal care assistants or physician-ordered nursing services.
Comfort and dignity. Although cognitive and memory functions are depleted, the capacity to feel frightened or at peace, loved or lonely, and sad or secure remains. Regardless of location, the most helpful interventions are those which ease discomfort and provide meaningful connections.
Caregiving support. The final stage care team might include home health agents, nursing home personnel, legal or financial advisors, hospice providers, and palliative care physicians. Working in advance with compassionate professionals to navigate systems, explore benefits, and weigh deeply-felt options can be extremely beneficial.
Grief support. Anticipating your loved one’s death can produce reactions from relief to sadness to feeling numb. Experiencing these profound life changes can ease your loved one’s final journey and support your ultimate recovery and happiness. Consulting bereavement specialists or spiritual advisors before your loved one’s death can help you prepare for the coming loss.

Care and placement options in final stage Alzheimer’s disease

Advanced illnesses, physical safety needs, and the 24-hour demands of final stage caring often prompt additional in-home interventions or out-of-home placement. Although many caregivers want to keep their loved ones at home, this requires stamina, space, and considerable support from others.

Although there are no right or wrong answers, multiple changes can be especially difficult for a patient with advanced dementia. Adjustment to placement is easier before the end stage. Care and placement decisions should reflect the patient’s current needs, plans for her eventual death, and the caregiver’s health, financial, and emotional needs.

Fortunately, many resources are available to help you with placement and service options. See the related links section below, and contact your area Alzheimer’s Association for a care consultation.

Can you take care of the person with Alzheimer’s disease at home?

Is qualified, dependable support available to insure 24 hour care?
Will your home accommodate a hospital bed, wheelchair, and bedside commode?
Are transportation services available to meet daily needs and emergencies?
Is professional medical help accessible for routine and emergency care?
Are you able to lift, turn, and move your loved one?
Can you meet your other responsibilities and your loved one’s needs?
Are you emotionally prepared to care for your bed-ridden loved one?

(Source: Adapted from The Loss of Self: A Family Resource for the Care of Alzheimer's Disease, Donna Cohen, PhD, and Carl Eisdorfer, PhD).

To evaluate other care and placement options, see Helpguide’s Choosing Senior Housing and Residential Care.

Family planning: decisions in late stage Alzheimer’s care

When patients with Alzheimer ’s disease (AD) reach the final stages, their caregivers have grieved physical, cognitive, and behavioral regression for years. Many struggle to make difficult treatment, placement, and intervention choices through a prism of continuous and profound loss. As your loved one’s serious decline becomes more evident, the skills and understanding cultured during caregiving can keep you engaged and committed.

End stage changes are often more difficult for family members than patients. Intricate and highly personal decisions can shift focus from comfort and dignity to unresolved personal or relationship issues. Following are tips for making patient-centered determinations in this last period of life:

Prepare early. The AD journey is eased considerably when placement, treatment, and end-of-life conversations are held in the first stages. Consider using the Five Wishes process to guide and formalize your discussion. Seek financial and legal advice while your loved one can participate. Consider hospice services, spiritual practices, and memorial traditions before they are needed. When caretakers simply implement their loved ones’ preferences, they are free to emphasize care and compassion.
Focus on values. If your loved one did not prepare a living will or advanced directives while competent to do so, act on what you know or feel his wishes are. Make a list of conversations and events that illustrate his views. To the extent possible, consider treatment, placement, and decisions about dying from his vantage point.
Address family conflicts. Family members vary in their capacities for emotional openness and expression. When stress and grief are heightened by a loved one’s deterioration and withdrawal, conflict may result. If you are unable to agree on living arrangements, medical treatment, or end-of-life directives, ask a trained doctor, social worker, or hospice specialist for mediation assistance. Prolonged disagreement can impact your ability to grieve and hamper your well-being.
Communicate with family members. Choosing a primary decision maker and a communicator to manage information facilitates family involvement and support. Even when families know their loved one’s wishes, implementing decisions for or against sustaining or life-prolonging treatments requires communication and coordination.

If children are involved, make efforts to include them. Children need honest, developmentally appropriate information about your loved one’s condition and any changes they perceive in you. They can be deeply affected by situations they don’t understand, and may benefit from drawing pictures or using puppets to simulate feelings, and hearing stories that explain events in terms they can grasp.

Helping a loved one in the final stages of Alzheimer’s disease

Insuring a loved one’s final years, months, or days are as good as they can be is not just a series of resource and care choices. Learning to live through grief, celebrate your accomplishments, and honor your loved one’s life will shape your emotions and determine your tasks.

Passage through the final stage of Alzheimer’s disease is affected by several factors: economics, family and friends, care options, and caregiver resilience. Ideally, the patient’s pain is well controlled, interactions acknowledge her remaining emotional presence, caregivers and other family members are supported, and there is time for a calm, peaceful goodbye. Your tasks may include the following:

Partnering to manage pain

Even in the last stages, patients with Alzheimer’s disease communicate discomfort and pain. Pain and suffering cannot be totally eliminated, but you can help make them tolerable.

Managing pain and discomfort requires daily monitoring and reassessment of subtle nonverbal signals. Especially when a dramatic decline in functioning occurs, families may choose to discontinue other medical interventions and focus on palliative care for the pain and symptoms associated with dying. With adequate help, this care can be provided at home.

Subtle, behavioral changes can signal unmet needs. Communicating written observations, times, and events to your medical team will provide valuable clues about your loved one’s pain status. The soothing properties of touch, massage, music, fragrance, and a loving voice can also reduce pain. Be open to trying different approaches and observe your loved one’s reactions.

Connecting and loving

Sharing human kindness through the final stages of Alzheimer’s disease takes many forms. Even when patients cannot speak or smile, their emotional memories remain.

Staying calm and attentive will create a soothing atmosphere and communicating through sensory experiences such as touch or singing can be reassuring to your loved one. Contacts with pets or trained therapy animals bring pleasure and ease transitions for even the most frail. Surrounding a loved one with pictures and mementos, reading aloud from treasured books, playing music, giving long, gentle strokes, reminiscing, and recalling life stories promote dignity and comfort all the way through life’s final moments.

Caring for yourself

As impossible as it may seem, taking care of yourself during your loved one’s final stages is critically important. Research shows spousal caregivers are more likely to experience despair while adult children find fulfillment through their caregiving roles. In any case, it is important to learn how to adjust, feel whole again, and move on

Coping with grief and loss as an Alzheimer’s caregiver

Ironically, the extended Alzheimer’s journey gives families the gift of preparing for, and finding meaning in their loved one’s end of life. When death is slow and gradual, many caregivers are able to prepare for its intangible aspects, and to support their loved ones through the unknown. Even with years of grief, others find themselves unprepared and surprised when death is imminent.

Talking with family and friends, consulting hospice services, bereavement experts, and spiritual advisors can help you work through these feelings and focus on your loved one. Palliative care specialists and trained volunteers assist not only on the dying person, but also caregivers and family members.

The end-of-life period, when body systems are shutting down and death is eminent generally lasts from a matter of days to a couple of weeks. Some Alzheimer’s patients die gently and tranquilly, while others seem to fight the inevitable. Reassuring your loved one it is okay to die can help both of you through this process. Decisions about hydration, breathing support, and other interventions should be consistent with your loved one’s wishes and advanced directives.

Working Through Grief

Caregiving is a demanding, difficult job and no one is equipped to do it alone. Feelings of gloom, anger and despair may be reactions to loss. Recognizing grief and its potential for healing can help you through the final stages of Alzheimer’s care.

Read: Coping With Grief and Loss

Moving on after final stage Alzheimer’s care

From the moment of a loved one’s Alzheimer’s diagnosis, a caregiver’s life is never the same. It can, however, be happy, fulfilling, and healthy again. Replacing lost relationships, using your experience to help others, and gaining new perspective will help your return to normalcy.

Reconnect

Join a caretakers’ bereavement support group. Being with others who know your situation, understand your emotions, and feel your suffering is good medicine.
Enroll in an adult education class. Find a yoga, Tai-Chi, or Salsa class. Acquiring new skills and staying physically active will promote healing.
Try a new community. Join a book club, volunteer, or start a neighborhood dine-around group. Your needs to enjoy, laugh, and connect continue after your loved one is gone.

Use your loss

Create lasting tributes to your loved one. Consider memorial sites, scholarships, plaques, scrapbooks, quilts, art forms, benches and charitable contributions to honor her memory.
Write a story, create a poem, make a tape. Share your loved one’s unique story with family members and other caregivers.
Become a mentor. Contact your local Alzheimer’s Association and ask them to pair you with a brand new caregiver. Use your knowledge to help another.

Gain perspective

Write your caregiver’s resume. List what you have learned and accomplished. By celebrating your considerable skills, you may discover a new avenue for work or expression.
Keep a journal. Confront your loneliness and allow yourself to see your progress through the healing process.
Talk to a therapist or grief counselor. Giving yourself permission to find new meaning and relationships can be difficult, but you have earned health and happiness.

Your acts of care and connection sustained your loved one through a long and difficult passage. Taking active steps to explore dreams, nurture yourself, and find creative paths to vitality are now your most important tasks. Sharing what you have learned, cultivating happiness, and finding new meaning build a loving finale to your caregiving journey.

To Learn More: Related Helpguide Articles

Alzheimer’s Care: Tips for your health and fitness in Alzheimer’s care.
Alzheimer’s Disease: Understanding signs, symptoms, and stages.
Coping With Grief and Loss: Support for end stage caregivers.

Respite Care: Relief for caregivers in Final Stage Alzheimer’s care.
Skilled Nursing Facilities: A placement option in Final Stage Alzheimer’s care.
Supporting A Grieving Person: Helping Others Through Grief, Loss, and Bereavement

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Topics

Late Stage and End-of-life Alzheimer’s Care

Caregiving in the Final Stages of Alzheimer’s Disease

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