One of the most difficult parts of dementia is losing the ability to make decisions. Not only is there confusion but often, decision-making opportunities are taken away from the individual when they receive a dementia diagnosis.
Loss of decision-making impacts self-esteem and self-confidence. A lack of self-confidence can lead to withdrawal and a downward spiral for the individual. Thus, it is important to try and include the individual in as many decisions as possible for as long as possible.
Understand Their Values
When making decisions for another, it is important to understand their underlying value system. Discuss with them what is important for them for quality of life and end of life care. You may need to do some digging here to get a good sense of what is important. Try and record as much as possible so that you will have a reference when their ability to communicate diminishes.
Discuss Treatment Options
Talk about the different types of care that will become options for them. You may want to discuss the types of treatment open to them as the disease progresses. Remember, you do not need to discuss this all at one time. It may be too overwhelming for them and for you. As well, over time their acceptance of certain types of treatments may change.
I had a friend who initially did not want a tracheotomy to help her breathe. However, when it became the time to make that choice, she chose to have one. It certainly added to her quality of life, though it was a choice she initially rejected.
Sometimes the shock of the diagnosis creates a paralysis that makes the mind recoil against some treatment options. Discussions about treatment should be ongoing, giving the individual the option to change their mind or even come to a decision over time.
Give Them Choices
Try and maximize the number of choices the individual has in their day. At the beginning, decision-making may be straightforward, however as the disease progresses that will change. Continuing to have decisions to make reinforces self-esteem and helps them retain their dignity.
As decision-making becomes more difficult, change the way decisions are presented. Take the abstract decision and make it more concrete. Limit the decision to two choices. For example, instead of asking them when they want to eat, ask them ‘do you want to eat now or later?’ This will give them an opportunity to decide but limit it so that there are two concrete choices.
While the abstract will become difficult to deal with, you still want them to exercise decision-making skills.
Watch Body Language
When asking them to make decisions, be aware of body language. The individuals will lose verbal ability before losing their ability to communicate through body language, so pay attention to their face for answers. You can also observe the way they move their body for signs of discomfort or agitation.
When You Must Make the Decision
As much as possible, discuss the choices for care with the person you are making decisions for. Even if you are the substitute decision-maker, try and convey to them the appropriate information needed for each decision. There will be a lot on your plate and a lot of decisions to me made. It is important, however to take the time to walk them thru the decision-making process.
One women that I worked with knew her house had been sold to her daughter. It had been discussed with her, even though the substitute decision-maker made the ultimate decision and signed the papers. She talked through the decision many times with me and came to the same conclusion each time. This repetition was part of her need to process the decision. It was important that she could do this, and it gave her peace.
Give Them Time
When making decisions, the default will be to try and move through the process as quickly as possible. You need to remember that obvious decisions for you may not be so obvious decisions for them. Whenever possible, try and take a three-step decision making process.
- Propose the decision to be made and let them think about it;
- Discuss the decision, going over the pros and cons; and finally,
- Make the decision.
Ideally this should occur on three separate occasions. Sometimes this will not be possible, but you do want to leave space for internal processing.
Making decisions for someone else is a heavy burden and can lead to emotional stress for you. Make sure you are recognizing this burden and taking care of your own emotional needs. This may require you to step away from caregiving for a short while or divide the decision-making between more than one individual. Whatever choices you make for the individual, keep their values in mind. At the end, this will give you peace with the role you played in their life.
Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.
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