End Stage Dementia Caregiving
In the final stages of many terminal illnesses, care priorities tend to shift. Instead
of ongoing curative measures, the focus often changes to palliative care for the
relief of pain, symptoms, and emotional stress. Ensuring a person’s final months,
weeks or days are as good as they can be requires more than just a series of care
choices. Anticipating the demands of end-of-life caregiving can help ease the
journey from care and grief towards acceptance and healing.
In the final stages of life-limiting illness, it can become evident that in spite of the
best care, attention, and treatment, the person is approaching the end of life.
Their care continues, although the focus shifts to making them as comfortable as
possible. Depending on the nature of the illness and the circumstances, this final
stage may last from a matter of weeks or month to several years. During this time
palliative care measures can provide the patient with medications to control pain
as well as other symptoms such as constipation, nausea, or shortness of breath.
Even with years of experience, caregivers often find the last stages of life uniquely
challenging. Simple acts of daily care are often combined with complex end-oflife
decisions and painful feelings of bereavement. End-of-life caregiving requires
support, available from a variety of sources such as home health agents, assisted
living facilities, nursing home personnel, hospice providers, and palliative care
At this stage, people require continuous assistance with basic activities of daily
life. Speech has become so circumscribed, as to be limited to approximately a
half dozen intelligible words. Speech will continue to become even more limited,
to at most, a single intelligible word. Once speech is lost, the ability to ambulate
independently (without assistance), is invariably lost.
As dementia progresses, people will lose the ability not only to ambulate
independently, but also sit up independently. At this point in the evolution people
can even tip over when seated unless there are arm rests to hold them up in the
Subsequently people lose the ability to smile and lastly the ability to hold up their