Dementia Directive

A New Living Will for Dementia is Now Available

A new “Dementia Directive” is now available.  Since being featured in the NY Times article written by Paula Span, the Dementia Directive has been downloaded more than 100,000 times, with downloads continuing at a rate of about 2,000 per month. It provides brief descriptions of the stages of dementia. Under each stage it provides options where you can indicate which medical interventions you’d want at that stage.

The Dementia Directive is a communication tool. It provides a way to share your views with loved ones, to let them know what you would want in case they have to make medical decisions on your behalf.  Families often face making difficult decisions about their loved ones’ care. This directive can help them feel more sure that the decisions they are making are closer to what you, their loved one, would have wanted.

Many of us have clear ideas about the kind of medical care we would want if we developed advanced dementia. This directive can lessen the chances that you might get more medical care – or less medical care – than you would have wanted if you develop dementia.

How it Helps

While this topic is on many people’s minds, now is the time to attach a Dementia Directive to your Advance Directive. Download it, read through and fill it out. Better yet discuss with your family and health care proxy and then put it into your Advance Directive.  A dementia directive made available to everyone after you turn 60 or 70 can allow you to express your wishes and communicate them to your loved ones and your doctors.

Choosing the right proxy

The most important decision is naming the right person to be their surrogate decision-maker or health care proxy in a Durable Power of Attorney for Health Care. It must be a person you know will truly go to bat for you and express exactly what your wishes are when you are not able.  

We often feel obligated to name their spouse, partner, or a child to be their surrogate decision maker. The candidate for decision-maker is not a good choice if he or she does not fully support the person’s decisions or is not assertive enough to confront medical and long-term care providers who disagree with his or her choices.

Select your  surrogate decision-maker very carefully. Alternatives to family include longtime friends or hiring a professional, such as a nurse, geriatric social worker, or elder law attorney willing to honor and carry out their wishes. Sometimes naming someone other than family can take the burden off a family member who is unwilling or emotionally unprepared to accept the responsibility.

Finally, a very important component of a peaceful, dignified death from Alzheimer’s is to obtain palliative care through the use of hospice. Despite the appropriateness and significant benefit for hospice care it is not often used.  A POLST mentioned above is very important in Dementia Care.