At some point in your life you will require someone to care for you, or you 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 or family member that they will always be there for them and will be at their side through sickness and health. This is very true for those who are caregivers for their family member who has been diagnosed with dementia — in this article we will discuss Alzheimer’s dementia specifically.
The role of the caregiver evolves with each change that the person with dementia experiences.
Each person’s journey as a caregiver is unique and has meaning for the individual and the person being cared for. However, there are some general themes and patterns found in the stages of Alzheimer’s disease and the role of the caregiver. Here are some of the changes that you can expect in the person you’re caring for and how these changes could affect your role as a family caregiver.
Early Stage of Alzheimer’s
The initial stage for the caregiver and the person with Alzheimer’s disease is recognizing that the disease is changing them. Their memory appears to be declining and they do not seem to be able to cope with change, organizing their schedules, or keeping up with current events and family activities. Since the person with dementia does not always recognize the changes in themselves, the 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 diagnosis and treatment.
This is a difficult phase as the future is uncertain, and the caregiver often has to grieve for both the lost relationship with the person in their care and what that person is losing due to dementia. It can be a painful experience but not one without hope, joy, and a satisfaction in being true to promises, commitment, and honoring the person with dementia’s wishes and dignity.
The amount of hands-on intervention to organize, plan, and carry out personal care activities for the person with dementia changes as the person loses their skills. The caregiver starts out as the advocate and supporter of the person’s journey. As time progresses, they may take on the role of decision maker concerning the finances and health of the person in their care — this is known as power of attorney.
These are often difficult areas to assume as it is seen as taking away the independence and dignity of the individual being cared for. Adult children who are their parents’ caregivers often state that they feel like the roles have been reversed. However, this is really an opportunity for the caregiver to be the advocate, a preserver of the person with dementia’s memory, relationships, and their wishes on how they would want to be treated and cared for.
The role of the caregiver changes again when personal care and basic care are required. This is often the most difficult phase as the caregiver must enter the private space of the person with dementia in order to provide care, or may seek out others to perform these tasks. Whichever the scenario, it is a role that most find intrusive and uncomfortable. Our articles, Assisting someone with daily living needs and Doing unpleasant tasks not in your caregiver comfort zone, can show you how to preserve the dignity, respect, and follow the wants and wishes of the person in your care.
End of Caregiving
Alzheimer’s disease is a progressive type of dementia. Although there is currently no cure, there are treatments that can help reduce the symptoms. Unfortunately, at some point the life of the person with dementia will end, often as a result of the physical changes associated with Alzheimer’s, such as an inability to swallow and increased vulnerability to infections. As the primary caregiver, you will need to review their end of life decisions and wishes before they pass away.
Each person with dementia has a different journey with timelines that are unique to the individual. Therefore, each caregiver’s journey, experience, and roles will be different as well. What is the same for all is that there is a progression for the persons diagnosed with dementia from independence to total dependence. The role of the caregiver then evolves with each change that the person with dementia 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 dementia. At these times, it is helpful to seek out professional help and advice to come to a decision on how to move forward. The Alzheimer Society of Canada provides many resources and programs that caregivers can access for support, guidance, and care.
Taking care of someone living with dementia can be stressful for family caregivers as well as the people in their care. While there may be days when you feel alone in your caregiver journey, we’re here to help. A Caregiver Coach can help you navigate the complex challenges that you’ll be faced with and will work with you to establish a simple, personalized, and detailed dementia care plan.