Alzheimer’s disease is a brain disease where brain cells progressively degenerate. The most common of a large group of disorders known as “dementias,” Alzheimer’s disease causes deterioration in thinking ability and memory. It also affects behaviour, mood and emotions, and the ability to perform everyday activities.
Alzheimer’s disease typically follows certain stages which will bring about changes in the person’s and family’s lives. Because the disease affects each individual differently, the symptoms, the order in which they appear and the duration of each stage vary from person to person. In most cases, the disease progresses slowly, and the symptoms of each stage may overlap, often making the move from one stage to another quite subtle. The duration of the disease is usually seven to 10 years but may be much longer in some people.
There is currently no cure for Alzheimer’s disease nor can its progression be reversed. Present treatment options and lifestyle choices, however, can often significantly slow the progression of the disease.
The early stage of Alzheimer’s disease (also referred to as “mild Alzheimer’s disease”) refers to people of any age who have mild impairment. This differs from the term “early onset,” which refers to people who have been diagnosed with Alzheimer’s disease at a younger age than usual.
Some people aren’t aware that they have the disease during this stage, and they may not be diagnosed until they are past it.
Common symptoms in the early stage include forgetfulness, communication difficulties, and changes in mood and behaviour. People in this stage often need little help. They may understand how they are changing and be able to talk to others about their experience of living with the disease. They may also wish to help plan and direct their future care.
The middle stage of Alzheimer’s disease is also called “moderate Alzheimer’s disease.” In this stage, thinking and memory continue to deteriorate but many people will still be somewhat aware of their condition. People in the middle stage of Alzheimer’s disease need help with many daily tasks.
For families and caregivers, it is the point where they may increasingly need to provide care. It may include moving the person to a care facility. This stage often seems the longest. Everyone involved will need help and support because of the increasing challenges faced by those with Alzheimer’s disease and their family.
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.
Some people may have an Advance Directive or “living will” that will help family members carry out the wishes of the person with dementia. 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, the overall health of the person with dementia, 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.
End of Life
The experience of dying is different for each person. It comes in its own time and its own way. However, the process of dying often follows a somewhat predictable path. Several physiological (physical) changes signal that death is near. Knowing what to expect during this difficult time can lessen some of the fears and worries. When a person with Alzheimer’s disease is in the very late stages of the disease, the focus should be on quality of life and comfort, rather than on lengthening life and giving treatment. Palliative or hospice (also called comfort) care focuses on the whole person’s needs—physical, emotional and spiritual.
At the end of their lives, most people with Alzheimer’s disease are being cared for in a care facility. The care required is extensive and is very difficult for family members to manage on their own. It is certainly more than one family member can manage alone. If the decision is made to have the person die at home, it is important that the doctor refer the person to home support services. This means a community nurse can help the family in figuring out what care is needed. The nurse can then teach the family how to give the care and provide support and direction as needed. Under the best circumstances, the family will be assisted by a palliative care team.