Late Stage Dementia - What Caregivers Should Know

Dementia caregivers who are caring for someone in the late or severe stage of the disease are in great need of support in numerous areas.

What are the feelings of the dementia caregiver with a loved one at this stage and what options are available for coping with the difficult late or severe stages of the illness?

For the person with dementia in the late or severe stages of the illness, they are experiencing a number of changes including:

• Difficulty with communication and physical functioning
• Loss of ability to toilet, feed, or dress themselves
• Slow progression of decreased motor functioning for things such as speaking, swallowing that results in a failure to thrive
• Discomfort and agitation
• Apathy and unresponsiveness

The dementia caregiver may be feeling exhausted from the heavy physical demands of totally caring for another person's daily functioning.  They also may be feeling guilt, overwhelmed, depressed, isolated and unsure of end of life decisions, including financial ones.  Their feelings might sound like this:

• "I can't last one more day."
• "I really don't care anymore."
• "It sounds cruel to say but I wish he were dead."
• "I feel so alone."

The greatest assistance that a dementia caregiver needs at the late or severe stage of the illness is usually help with the high physical demands of the care.  If the dementia caregiver has not previously explored long-term care options before this point, this is often the time that the caregiving tasks require it.  Here are some of the options for dementia caregivers coping with the late or severe stage of dementia:

• Assistance with physical care (via family, home health staff)
• Support group attendance
• Day care (if applicable at this stage).  An ideal set-up would be a day care setting that also has a support group attached to it.
• Guidance with advanced care planning:  is a living will present?  What are the loved one's wishes at the time of death?  When food intake becomes an issue, will a feeding tube be an option?
• Financial/estate planning discussions
• Possible placement in a long-term facility that is equipped with a hospice or palliative care area and offers comfort care and pain management of the late stage of the illness.

For any dementia caregivers who are currently struggling with the caregiving tasks of the later or severe stages of the disease, what other options can you offer to our readers?