The late stage of Alzheimer’s disease may also be called "severe" or "advanced.” People in the late stage have decreased mental ability. Eventually, they become unable to communicate verbally or look after themselves. They also become more frail physically and need 24-hour care. The goal of care at this stage is to continue to support the person to ensure the highest quality of life possible.
Decisions will need to be made throughout the late stage of Alzheimer's disease. These decisions may be difficult and you may feel uncomfortable making them, especially those dealing with life-prolonging treatments and what the individual might consider a comfortable death.
Respecting the expressed wishes of the person with dementia should guide all end-of-life care decisions. A guiding principle should be to uphold his dignity, privacy and safety.
When making decisions on behalf of another person, it is important to follow the person's wishes, if they are known. If they have not been communicated, knowing his values and beliefs can help you make a decision that most closely resembles the one he would have made.
Read our brochure for more information
Some people may have an Advance Directive or "living will" that will help family members carry out his wishes. If plans have not been made, or if family members disagree, you may want to consider asking a third party -- such as a member of the health-care team, clergy or counsellor -- to help.
You will continue to make decisions regarding care strategies
throughout the disease process. These decisions should take into consideration the progression of the disease, his overall health, and risks and benefits of care strategies.
Decisions that you might face include treating a broken hip after a fall or choosing whether or not to begin tube feeding. Continued communication with the doctor and other members of the health-care team will be important during this time.
People in the late stage:
- Experience severe loss of memory, ability to process information and understanding of time and place
- Lose their ability to speak, although they may still say words or phrases. Non-verbal communication will become more important.
- May rock back and forth or keep calling out the same sound or word. They may also constantly wring their hands, pull at their clothes, tap or fidget. They may even touch themselves inappropriately in public.
- Become more agitated in the late afternoon and early evening, a phenomenon often called “sundowning”
- Need help with eating and using the toilet. They often cannot control passing of urine and stool.
- Lose the ability to walk without help, then the ability to sit without support, the ability to smile, and the ability to hold their head up. The brain appears to no longer be able to tell the body what to do.
- Cannot swallow properly
- May lose weight
In many cases, those with late-stage Alzheimer’s disease need to live in a care facility. If they are at home, they need added support. People with late-stage Alzheimer's disease cannot think of or start activities on their own. So, whether they are at home or in a facility, the goal for late-stage Alzheimer care should be making the person’s quality of life as good as it can be—to be at the highest level of well-being possible, physically, mentally and emotionally. Activities should fit whatever strengths and abilities the person with Alzheimer’s disease has, taking into account the person's life history, likes and dislikes.
For more information about quality care in the late-stages of dementia, please watch this webinar hosted by the Canadian Dementia Resource and Knowledge Exchange.
Last Updated: 12/16/11