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The Late Stage: Facing Hard Choices and Letting Go
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Because Alzheimer’s disease usually progresses quite slowly, many years can have passed before the person with dementia reaches this stage.  This can be a very emotional time for caregivers who are often exhausted by the demands of caregiving.  The ravages of the disease are evident at this point and the person is often living in a residential care facility. Hard choices regarding care need to be faced and made by caregivers.

  • In the late stage of Alzheimer’s disease, the brain is no longer able to tell the body what to do. The person cannot walk, dress, eat or go to the bathroom without assistance. There is severe cognitive decline and verbal abilities are lost.  There is little purposeful activity.  Loved ones are no longer recognized.

  • Persons with dementia are at great risk for skin breakdown, constipation, pneumonia and other infections. This is because they are not moving around very much at this point. Their care needs to be focused around addressing these issues.

  • Persons with dementia always know who loves them and are comforted at a basic level by that loving care. Affectionate caregivers can engage them in sensory stimulation activities – such as using touch, calming aromas and music.

  • Caregivers are at risk for their own health problems because of emotional overload. At this stage most caregivers have had to place the person with dementia into residential care. This is one of the most emotionally difficult decisions that caregivers have to make in the course of the disease. It is also very painful to see the person with dementia lose so much of their personality and functioning.

  • Caregivers and their families need to discuss and decide on difficult medical issues.  The family needs to agree on what comfort measures or medical procedures this person would have wanted – particularly if there is no living will. They need to decide about the use of antibiotics, the merits of hospitalization, artificial feeding and hydration when the person is not able to swallow.

  • The services of a Hospice program are useful and available in this stage. The primary purpose of Hospice is to provide end of life comfort and support for persons who are in the end stages of their illness and their family members and friends. The services are covered under Medicare and can be provided at home or in a residential care facility.  Hospice staff (physicians, nurses, social workers, chaplains and volunteers) provide compassionate care for the person with Alzheimer’s disease and support and counsel for the family members. Hospice programs can be enormously helpful in educating caregivers about the process of dying and helping them through it. This support from hospice staff can continue for the family and friends after the person with dementia dies.

  • The process of letting go and grieving is always difficult even when someone has been ill for a long time.  Caregivers have been experiencing losses throughout the course of the disease as the person with dementia gradually loses their functioning and personality. Thus, caregiving for someone with dementia is essentially about loss and grief. It is important for caregivers to seek and accept emotional support from family and friends throughout the disease process.


Return to "Stages of Caregiving"



Alzheimer's Association

Our vision: A world without Alzheimer's disease®.
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.