One heart-breaking consequence of having a parent with Alzheimer’s or dementia is the resulting upheaval in the family dynamics. The resulting loss of memory and cognitive ability often means you have to step in and become a caregiver, assuming responsibility for making difficult medical and financial decisions. Though it may be natural to assume your parent doesn’t comprehend his/her situation or could contribute to the discussion, this isn’t the case. As The Alzheimer’s Voice: Person-Centered and Person-Directed Dementia Care Report, prepared for the Administration on Aging’s Administration for Community Living, suggests, people with Alzheimer’s are aware of their situation and do want a say. So how can families allow their loved one to exercise autonomy in the face of a disease that seems to rob them of it?
Adopt Person-Centered Approach
Person-centered care is a new shift in the healthcare field, whereby emphasis is placed on all aspects of a person’s well-being including emotional, spiritual and social, in addition to physical and medical (page 5). Researchers have proposed a number of definitions of what is person-centered dementia care, and at the heart of all these definitions is respecting the autonomy and personhood of the individual and striving to maintain their quality of life.
The report points out that “people do not surrender their right to autonomy simply because they have a diagnosis of AD [Alzheimer’s disease] and the disease exists along a continuum of capability. Especially in the early to moderate stages of AD, individuals are able to actively participate in the decision-making that affects their lives. And even people with severe dementia can make their preferences known on a variety of important everyday decisions” (23).
Adopting a person-centered approach when caring for your parent doesn’t mean you shouldn’t step in and assume responsible for aspects of your parent’s life. Instead, it means you work together to find a solution that is respectful of their autonomy while keeping them safe. For example, when it comes time for you to assume responsibility of their finances, explain to your mother or father beforehand why it is necessary to manage to their finances and how can you work together to ensure they can still continue going shopping while having the bills be paid on time.
When visiting their physician for medical appointments, make sure the physician is addressing your mother or father, in addition to you, and is considering their opinion when providing recommendations. This will ensure your parent is being included in the decision-making process.
Benefits of a Person-Centered Approach
You want create the best quality of life possible for your parent as they live with Alzheimer’s disease, and adopting a person-centered approach has been found to yield positive benefits. “[W]hen individuals with dementia have greater involvement in daily decision-making, they have lower levels of depression and less negative relationship strain (Menne, Tucke, Whitlatch, & Feinberg, 2008). Depression is significantly correlated with quality of life, but cognitive impairment is not (Thorgrimsen et al., 2003)” (9).
Studies have also shown that starting the dialogue early of what your parent’s wishes are will leave you better prepared for assuming the caregiver role when it’s time; “[w]hen treatment goals and desires are supported by both caregivers and care recipients, caregivers gain a better understanding of the person’s wishes and therefore feel better prepared and less burdened with decision-making (Whitlatch, Judge, Zarit, & Femia, 2006)” (10).
Though you cannot prepare for all the challenges that will arise when caring for a parent with Alzheimer’s, understanding their wishes will also leave you better prepared as the disease progresses and you are solely responsible for all decisions.