Making Decisions for Others Living with Dementia: When Do I Step In?
Confused by whether you should step in to help your family or friend who has been diagnosed with dementia? There are simple questions that hold the key to informing your answer.
“They don’t want my help?”” They don’t think anything is wrong?” “How do I know if they are taking their medications correctly? “ How do you know when to help make decisions for someone living with dementia?
These are the types of questions and concerns I hear all the time. These issues are often the most difficult to handle. At times, due to dementia, persons living with dementia (PLWD) make choices that may not be in their best interest such as falling prey to predatory calls. Or, again due to the changes in the brain, may latch on to and focus on only one fact in a bigger picture that needs to be considered to make an informed decision. Because dementia affects everyone differently, we cannot assume by virtue of the diagnosis, that the PLWD cannot make decisions for themselves.
Let me help you think through how to answer the question for yourself and guide you as it will come up each time there is a change in your family member’s condition.
Important guidelines to follow when considering if you need to make decisions for others with dementia
The person living with dementia is always a person first!
Do not forget to engage them in any conversation or decision.
The following quotes are the the Alzheimer’s Association website from individuals with early stage dementia
“I’m still the same person I was before my diagnosis.”
“My independence is important to me; ask me what I’m still comfortable doing and what I may need help with.”
“It’s important that I stay engaged. Invite me to do activities we both enjoy.”
“Don’t make assumptions because of my diagnosis. Alzheimer’s affects each person differently.”
Safety is a common concern, but not the only concern in making decisions.
Some individuals would choose independence, connection, choice, quality of life (as examples) over safety. There is never absolute safety; considered the calculated risk . Is ability to go for a daily walk, even if the person living with dementia (PLWD) may get lost, more important to quality of life and sense of independence, than perfect safety. Can strategies be put into place to assist in mitigating the risk, even if they cannot take the risk away completely?
Assessing ability of person living with dementia to make decisions
To balance your family members autonomy with providing the best care for them (even when they may not agree), we need to assess their ability to make that decision. This can be done by asking a series of simple questions that need to be modified to the condition before you and have been studied and used to understand decisional capacity (1: MacCAT tools or MacArthur Competence Assessment Tools).
In summary –
- the question will address whether your family member understands the facts involved in the decision,
- whether they understand the risks and benefits in their own life,
- to be able to reason about the likely outcome,
- and to express a choice.
An example of when someone with dementia needs help in making a decision
Let’s run through an example regarding driving to see how this might be put into practice.
Your father would like to keep driving for a number of reasons – he enjoys his independence, he will not be able to meet friends for lunch each week without a ride, he will not be able to participate in his golf league without a ride, he hasn’t had any accidents, he has been driving successfully for 50 years.
You are concerned that with the diagnosis of dementia, he may become lost driving, his ability to drive safely may be compromised and you do not want him to kill himself or others.
Dad – can you tell me the reasons you would like to drive and the reasons I have concerns (the facts and in this example, also the risks and benefits)?
What happens if you can no longer drive? Isolation, depression, dependence
What may happen if you continue to drive? Accident, potential risk to myself and others
What is your choice? I would like to drive, but I don’t want to hurt anyone. Are there any ways that we could test me to see if I can drive safely?
As you can see with this example, there may be a way to continue to drive, if the PLWD is tested periodically for the ability to drive safely. That they can reason through the discussion reveals retained capacity. If they could not acknowledge that there are risks to their driving due to the diagnosis of dementia, that would be worrisome and likely suggests that they are not in the best place to make the choice about their driving. Implementing strategies to assist in finding rides, minimizing isolation, depression and dependence would be the best strategies moving forward.
Adapting these questions to whatever the situation will help you know when the decision can remain with the PLWD and when you may have to step in to assist. The conversations take some time, but can strengthen your bond and will provide your family member with the most autonomy in each area of their life for as long as possible.
Finally, for tips on how to help you as the helper, sign up here.