There was a crisis in the family. Mom, diagnosed with dementia, has a fall, and was admitted to hospital. Their daughter was worried that Dad would not be able to care for Mom at home. Dad was sure that he could. Daughter was sure that he couldn’t. What to do?
This scenario is a common one. If you haven’t lived it, I’m sure you can imagine it happening. So, when it does happen, how do you decide who gets to decide.
As adults, we have the right to make decisions for ourselves. The law recognizes that everyone has this right to self-determination. We can make our own decisions but we don’t make them in a vacuum.
Every decision we make is influenced by the people in our lives, our past experiences, and our emotional state at the time we make the decision. We are also influenced by our culture and beliefs, our tolerance for risk and financial pressures.
And each of us will make different decisions when faced with similar facts because we react differently to these influences.
We may even make unusual or unwise decisions — but they are ours to make.
A diagnosis of dementia does not take away decision-making capacity. Even an individual with dementia can still make many decisions about their care and living arrangements. They may just need more support in making decisions. But the default should be to help them make their own decisions as much as possible.
The Capacity to Make Decisions is not “All or Nothing”
An individual with a cognitive impairment, like dementia, should be supported to make their own decisions for as long as possible.
Decisions range from complex to simple. From the simple everyday choices of what to wear to the more life-changing ones, like where to live.
It is natural that there will come a time when complex decisions are too difficult to make but simple decisions can and should still be left with the individual. Continuing to support the individual in their decision-making is important for the maintenance of their self esteem and self-respect. Even complex decisions can be made with support.
For example, initially after an dementia diagnosis an individual may still be able to travel to familiar places alone but may need more support, like a bus pass instead of money. As well, they may need visual reminders or cues about when it is time to get ready for an event or labels on doors to different rooms in the house to help with navigation.
As the illness progresses an individual may be able to decide that they want to go somewhere but need someone else to make the arrangements for them. They may be able to heat meals up in the microwave but not really use the stove to cook.
Living at home is possible for much longer than it used to be. There are lots of supporting gadgets that make aging at home easier. As well, there are many options to make a home safer, and a visit from an Occupational Therapist may be appropriate.
Check Your Bias
When an individual is diagnosed with dementia, there seems to be a default inside of us that assumes they shouldn’t make decisions anymore. Part of that is a motivation to protect them from hurting themselves but it also stems from an unconscious bias that assumes incapacity.
But you should start from the position that the individual has the capacity to make the decision. From that decision to let them decide should come the desire to provide support to facilitate their decision. This is the best and most appropriate default position to have.
Assessing Your Decision
But if you do become the decision-maker, how do you make good decisions? What should you measure your decision-making against?
- The decision must benefit the individual and be in their best interests.
Making good decisions requires you to stand a bit outside of yourself. The focus should be on the quality of life of the individual. Making sure they can maintain relationships with family and friends and personal interests and activities is important.
- The decision should consider their past and present wishes, values and beliefs.
For example, if your mom or dad attended Church in the past, support them by making sure they can still get to Mass. If they had certain wishes for end of life care, try and organize the support they would want. It is also important to be sensitive to evolving wishes and desires. The important thing is to show love and affection to the individual so that they feel accompanied in their journey.
- The decision should consider the views of others
Even when there is tension between family members, it is important to consider everyone’s perspective. An estranged son or daughter should still be asked for their perspective. The way decisions get made at this point will reverberate through the generations and affect family members for years to come. Even if your sister-in-law irritates you, it is a good idea to listen to her perspective. Everyone has a need to be heard and good decisions benefit from multiple view points.
- Restrict the individual’s freedom as little as possible to meet their needs
Try and create living arrangements that allow individuals’ to be as free as possible. I find it hard to contemplate living arrangements where an individual can never get outside, but that is common. Choose more freedom rather than less when creating a support network for the one you are deciding for.
- Encourage the use of their existing skill set and to develop new ones.
Individuals challenged by dementia retain a great many skills and abilities. They should be encouraged to continue to do as much as possible and to learn new things.
I remember teaching a client of mine how to play Sudoku. He was so proud of learning that new skill. It was a great boost to his self-esteem. Create opportunities for them to still experience new things and enjoy activities and events — at their pace.
Making decisions for a loved one is challenging. But taking care of them and making the best decisions you can to enhance the quality of their life will pay benefits for both of you. You will know that they are getting the best care possible, and your legacy of love will be a legacy worth leaving.
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.