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.
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.
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.
Late Stage Symptoms
The late stage of Alzheimer's may last anywhere from several weeks to several years. Intensive, around-the-clock assistance is usually required. Caring for the person with Alzheimer's disease is most successful when the focus is on preserving quality of life and dignity and treating the person with compassion and respect.
In the last stage of Alzheimer's disease, a person usually:
In the last stage of Alzheimer's disease, a person usually:
- Little to No Memory: Short- and long-term memory is severely impaired.
- No recognition of family or friends. The person may not recognize him or herself in the mirror. They may think that their spouse is a stranger or the person in the mirror is a stranger.
- Great Difficulty Communicating With Others: The person may be unable to speak or understand words.
- Difficulty Remembering How to Eat: The person may have difficulty coordinating the steps of biting, chewing, swallowing, etc. Despite good nutrition and meal supplements, typically there is weight loss.
- Difficulty with Coordinated Movements: The person may walk unsteadily. Fumble when grasping objects, to be unable to hold onto objects. Needs assistance walking and eventually becomes bed-ridden or chair-bound.
- Increased Frailty: Muscles may weaken and people are susceptible to infections, pneumonia, and other physical illnesses.
- Loss of Bowel and/or Bladder Control.
- Upset Sleep Cycle: The person may be able to sleep only with the help of sleep medications.
- Needs full-time help with personal care, activities, or interactions, including toileting.
General Recommendations
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 as possible for the inevitable outcomes. 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.
- 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.
- 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.
- 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.
- 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 actions.
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.
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.
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.
Can you take care of the person with Alzheimer’s disease at home?
At some point you may need to re-evaluate your approach if you want to keep your family member at home, or it will be the best for everyone to consider the special accommodation. Definitely, economic reasons come in action, since long-term care for Alzheimer’s might be very expensive, you might not be able to comply with the required monetary obligations.
- 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?
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