Dean Hart: Alzheimer’s Disease and Legacy

If you are a caregiver for someone suffering from Alzheimer’s disease (AD), you may face difficult challenges as you try to provide personal care assistance and understand changes in behavior of the person you are caring for. Whether you are a family member, a loved one or private home care agency, understanding the behavior of a person with AD can help lessen these difficulties.

According to Dean Hart, Alzheimer’s is a progressive disease and it’s important to understand that maintaining and preserving an individual’s personal and private life is key to their quality of life in the long-term.

“Unfortunately, Alzheimer’s is not the type of condition that could be managed with a single pill taken daily or avoided completely with a brief, unpleasant shot” says Dean Hart. Alzheimer’s is a disease that is still so much of a mystery waiting to be solved. 

The greatest way to combat fear is through establishing the knowledge to prepare for the worst case scenarios during the earliest stage of diagnosis. 

The direct wishes of the individual should be accurately preserved in writing. Documenting care choices in advance greatly benefits individuals as a way to determine the best path for their private and public lives. Their futures should still be as much of their choice as possible, which is why it is crucial to make decisions and document them as soon as possible. Covering costs of Alzheimer’s care can become costly when paying for ongoing medical and custodial care so being realistic about symptom progression is crucial.

Early Diagnosis

An early Alzheimer’s diagnosis provides you with a better chance of benefiting from treatment. An opportunity to participate in clinical trials: An early diagnosis makes individuals eligible for a wider variety of clinical trials, which advance research and may provide medical benefits for that individual. Routine check-ups and examinations can help determine if you or a loved on are in the early stages of Alzheimer’s.

Some lifestyle changes, can help preserve cognitive function and mental processes such as controlling blood pressure, stopping smoking, participating in exercise, and staying mentally and socially active by playing board games, crossword puzzles and specific aging in place exercises.

Advance Directives for People with Alzheimer’s Disease

According to Dean Hart Alzheimer’s medical journal, AD affects who a person is in the present moment, but does not change who they are at the core of their legacy. Their values and philosophies remain the same at the root of their being. Due to the vulnerable state of mind, selecting an AD that the caregivers must hold in regard can help all stakeholders make decisions with moral legitimacy and integrity.

Personhoods

The individual’s past and present life experiences need to be consolidated to preserve their wants and needs. “Personhoods” is the concept of who the person is combined with their current experience after diagnosis. Reconciling these two parts of self can help caretakers and stakeholders gain a better understanding for the individual. 

We have to maintain the pursuit of happiness for these individuals. The autonomy of the person and protection of their legacy deserves equal or more weight than a decision-making third party when the patient is able to communicate their specific wants and needs for the future. 

Coping with the Unknown

The difficult question that weighs on the minds of many is how can it be known if patients would have changed their minds given the patient’s current circumstances and progression of the disease? A possible way of developing peace of mind can be through limiting the AD and RAD to treatment and research decisions after significant memory loss occurs. 

If a person wanted to withdraw an AD or RAD and expressed an unwillingness to engage in research.There is a moral defense that the person of the moment must not be deprived of a right to withdraw should they choose. This leads back to the importance of understanding the progression of the disease. The individual can also utilize input from family, friends, or doctors. The autonomous decisions of patients regarding their care should always be honored. With support from the people closest to them coping with the unknown can be far less intimidating. 

You can read Dean Hart Alzheimer’s medical journal on advanced directives here:

Reference: https://journals.library.columbia.edu/index.php/bioethics/article/view/8594