By: Lee Anne Davies
Retaining your personal autonomy in difficult times.
The emotional impact of receiving a diagnosis of Alzheimer's will be very personal. How you deal with these emotions and your pathway through the disease process will also be unique to you. You may benefit from medications that slow disease progress or your health deterioration may be much more rapid. Regardless of the pathway, changes in your decision-making abilities will occur. There is no formula for determining the decrease in cognition as the disease progresses. There also is no single medical or cognitive assessment that can pinpoint your decision-making ability level.
Through observation by others, there will come a time when your decision-making will be increasingly restricted. You can prepare for these changes through planning and communications with trusted people in your life and this can help ensure your autonomy is supported and respected. You are not your diagnosis. You are an adult with rights and responsibilities who should be encouraged and enabled to retain your preferred level of control over all decisions in your life for as long as possible.
Through observation by others, there will come a time when your decision-making will be increasingly restricted.
Keep financial decision making personal.
After receiving your diagnosis, which for many is a confirmation of changes they or their loved ones were already observing, do not rush out and update all legal and financial matters. Take time to consider your future and those who are important to you including appropriate personal, financial and legal actions. Unfortunately at this time research in the field of decision-making and dementia is relatively new and there is no gold standard for assessing decision-making.
What we do know is that changes in decision-making ability will not occur equally across all areas in life. In other words, decision-making capacity is decision-specific. For example, a decision on living arrangements requires less cognitive ability than a decision on selling a business or selecting stocks or mutual funds. Therefore, a decline in decision-making abilities in one specific area such as investments does not determine your ability to make decisions in another area such as personal real estate.
There is no single assessment tool that determines cognitive ability across all cognitive dimensions. As you share your diagnosis with others take the time to educate them on decision-making changes and how they can support you. Do not accept feedback that reduces your confidence or personal autonomy. For example, if an investment professional suggests that you are not able to provide stock trading orders, do not accept this as an indication that all areas in your life are affected. You need to be your own advocate.
Engage your loved ones.
Trusted family members and friends also need to advocate alongside you. You may need to educate them about the range and categories of decision-making so they understand some of the stigma and potential discrimination you may face. Inform them that decision-making can remain effective in some areas much longer than in others so that they do not inadvertently obstruct your autonomy. Their desire to protect you from 'wrong' decisions could result in you becoming prematurely dependent on them.
Discuss what it means to make a 'wrong' decision. If we were the proverbial fly-on-the-wall in other people's lives we may choose differently, but this does not mean that any decision is 'wrong', nor does it indicate cognitive impairment. Remind people of your values. As the disease progresses others will step in to assist you. Eventually those you have identified to do so will make all decisions on your behalf. Now is the time to prepare everyone to respect your personal priorities in the least intrusive manner.
Make your will a priority.
When prioritizing your decision-making list, place wills toward the top of your list. Only you can modify your will. A substitute decision-maker such as someone with a power of attorney for property, cannot make changes to your will. Therefore it is important to get this document finalized early on. Delaying a will too long could result in legal counsel deciding that your decisional capacity is not sufficient to create or modify a will. At this point there would be no alternative option.
Honesty is the best policy.
When you meet with legal counsel make sure to disclose your diagnosis. Even if your symptoms are not noticeable this will help ensure that no one can challenge your will by suggesting you were not mentally capable of estate-related decisions. Lawyers are trained to ask questions that determine their client's cognitive capacity to provide legal instructions. When the will is finalized and signed, ensure that one signed copy is filed in a safe place so your executor can readily access it after your death.
Take the time to cover your tracks.
Although some people will not need to update their wills when diagnosed with Alzheimer's, it is advisable to check with legal counsel to ensure there have been no changes in estate or tax rules that may affect decisions such as trusts, charitable giving, or discretionary decision-making by executors. Ensure that no personal changes in your life have affected or even revoked your will such as divorce, re-marriage, re-location to another province, or the birth of an additional beneficiary such as a grandchild.
Brought to you by The Alzheimer's Society of Ontario.
This story was originally published in the Alzheimer's Society of Ontario's newsletter as well as on alzlive.com, a website for caregivers of people living with Alzheimer's and dementia.