There are different stages associated with Alzheimer’s disease, a degenerative and progressive form of dementia that affects the areas of the brain responsible for memory, language, and thought processes. There are also some changes that the family caregiver can not only expect in the person they are caring for, but also in their role as caregiver.
While each person’s journey as a caregiver is unique and has special meaning for the individual and the person being cared for, there are some general themes and/or patterns associated with the stages of Alzheimer’s dementia.
Becoming a family caregiver
At some point in everyone’s life they will either require someone to care for them or they will be asked (or feel compelled) to be a caregiver.
Most family caregivers take on this role because they have made promises to their spouse/partner or family member that they will always be there for them and will be at their side until death. This is very true for those who are caregivers for their family member who has been diagnosed with Alzheimer’s.
What to expect in the first stage of Alzheimer’s disease
The challenge with the initial stage of Alzheimer’s for both the caregiver and the person with the disease, is in recognizing that the person is changing.
One of the signs of early stage Alzheimer’s is memory loss; their memory appears to be declining and they do not seem to be able to cope with change, organizing their schedules, and keeping up with current events and family activities.
Since the person with early stage Alzheimer’s does not always recognize the changes in themselves, the family caregiver assumes the role of being their advocate and must work through the various physician appointments and tests that are required to get the right treatment and/or diagnosis.
This first stage of Alzheimer’s is a difficult phase as the future is uncertain. The family caregiver often has to grieve for both the lost relationship with the person in their care and with what that person is losing due to the disease. It can be a painful experience but not one without hope, joy, and a satisfaction in being true to promises, commitment, and honouring the wishes and dignity of the person with early signs of Alzheimer’s.
What to expect in the middle stage of Alzheimer’s disease
During second stage Alzheimer’s, the amount of hands-on intervention to organize, plan, and carry out personal care activities for the person with Alzheimer’s can continually change as the person loses their skills.
The caregiver may start out as the advocate and supporter of the person’s journey. As time progresses, the caregiver may need to take on the role of decision maker concerning the finances and health of the person in their care.
These are often difficult roles for family caregivers to assume as it can be seen as taking away the independence and dignity of the individual being cared for.
In middle stage Alzheimer’s, adult children who are their parents’ caregivers often state that they feel like the roles have been reversed. However, some would say that there is really an opportunity for the caregiver to be the advocate, and a preserver of the person’s memory, relationships, and their wishes on how they would want to be treated and cared for.
What to expect in the final stage of Alzheimer’s disease
In final stage Alzheimer’s (a.k.a. late stage or end stage Alzheimer’s) the role of the caregiver changes again when personal care and basic care are required.
Final stage Alzheimer’s is often the most difficult phase as the caregiver must enter the private space of the person with the disease in order to provide care, or they may need to arrange to have others perform these tasks.
End of life
As mentioned, Alzheimer’s disease is a progressive type of dementia and, at the moment, there is no cure. Unfortunately, at some point, the life of the person with Alzheimer’s will end, often as a result of the physical changes associated with the disease, such as an inability to swallow and increased vulnerability to infections. As the primary caregiver, you will need to review the end of life decisions and wishes before the person’s death.
The evolving role of the caregiver
During each of these three stages of Alzheimer’s disease, each person will have a different journey with timelines that are unique to the individual. Therefore, each caregiver’s journey, experience, and the roles they play will be different as well.
What is the same for all throughout the three stages of Alzheimer’s disease is a progression for the persons diagnosis from independence to total dependence. The role of the caregiver then evolves with each change that the person experiences—there is more responsibility to assume and some of the roles may be more uncomfortable.
Sometimes it is difficult to understand when to take action or provide assistance with decision-making on behalf of the person with this form of dementia. At these times, it is helpful to seek out professional help and advice in order to come to a decision on how to move forward.
The Alzheimer Society of Canada provides many supports and programs that caregivers can access for support, guidance, and care during the different stages of Alzheimer’s disease. There are many books and resources on being a caregiver that you may also find helpful.
Taking care of someone living with Alzheimer’s dementia can be stressful for family caregivers as well as for the people in their care. Be sure to draw on all possible support.