The pandemic has made it clear how detrimental isolation and stress can be for people with dementia, as death rates attributed to Alzheimer’s and other dementias rose more than 20 percent this past summer. Hopefully this was an outlier situation, but it doesn’t negate the importance of planning ahead, which is critical for anyone who wants to age well—where best to live, in which sort of situation, who might serve as a caregiver in case of illness and other such details. Such planning always should include specific details on how one would like to be cared for if Alzheimer’s or other dementias enter the equation.
In advance of World Alzheimer’s Day, Sept. 21, Compassion & Choices, whose tagline is “Live life on your terms,” has developed two new highly pragmatic resources to help older adults and their families do exactly this type of planning.
The Dementia Values and Priorities Tool is a free resource that walks a person through the steps necessary to help identify personal values and care wishes so one can remain in control as the disease progresses. It also allows one to relieve relatives of the burden of making difficult decisions when they become impossible for the person with dementia.
Some people want all life-prolonging treatments possible, others want the minimum of interventions and just to be kept comfortable. This easy-to-use tool takes people through choices step-by-step, crossing off options as one goes.
One can choose between four levels of care for a multitude of situations: When one is happy, anxious, in pain, etc. It’s a thorough, useful tool.
The second, also free resource, called the Dementia Decoder, is similar in its methodology, but details ways to talk to one’s physicians and which questions to ask to elicit the answers needed. For the question What Are You Worried About, one can choose Avoiding unnecessary tests, treatment, pain or suffering, or Understanding my dementia diagnosis at various stages, three more such choices, or to write in original questions. Then up pops a list of questions to ask the doctor, which can be emailed back to the person using the tool.
Both of these tools are geared toward people who are either worried about receiving or who have received a diagnosis of dementia, and their caregivers. They can be used at any point in the disease progression. ASA recommends sharing them widely among its members’ constituents, as the tools are a concrete, actionable way to prevent some stress, and get a handle on what can be an incredibly difficult diagnosis.