Gather information

Understand the decision

Supporters often fall into the habit of making decisions for the person they support. The person may not be used to making decisions either. A first step is for the supporter and decision-maker to believe in the person's decision-making capacity.Think about the context:

How did this decision arise?
How does the person feel about it?
Is this a new type of decision for the person? Do they have experience to draw on?
Is this an urgent decision that requires quick action?

Every decision, no matter how small, can be meaningful:

How does this decision matter to the person?
How does it connect to their life goals and dreams?

Making a complex decision can feel overwhelming. Try to break it down into smaller easier questions. For example:

Instead of "Where do I want to go on holiday?"
You might start with: "Do I want to go on holiday?"

Theresa's story

Theresa is living with dementia. Being a Mum is important to Theresa. Being involved in the household decisions is important to Teresa.

Theresa and her family realise that there are many household decisions that Theresa can make daily with support. Theresa and her family supporters sometimes break the big decisions into stages to make it easier.

You can meet Teresa in this video. It is about 5 minutes long. This video is shared from the Cognitive Decline Partnership Centre.

Video transcript

On-screen: Logo for Cognitive Decline Partnership Centre. Theresa’s story. Theresa Flavin, Dementia Advocate.

Theresa speaks:

Theresa: My name is Teresa Flavin. I was diagnosed with dementia roughly seven years ago, when I was in my mid-40s.

I have five children and a selection of grandchildren and animals and I'm living with dementia the very best that I can.

The most important part about continuing to live with dementia is to take an active role within my family. I felt like I was always the head of the family.

I recognized very quickly I needed some support with understanding just how I could continue to run a house, how I could continue to be a Mum.

On-screen: Meadbh Flavin. Theresa’s daughter

I'm Meadbh. I'm Theresa's daughter and I'm 14 years old and I love to ride horses.

Since my mom was diagnosed things have changed a lot.

I try my best to help as much as I can while she's you know, helping out with her work or I try my best to keep on top of the animals so she can spend more time to rest so then the next day she'll be really well.

Theresa: Supported decision-making is when I don't have to try to make every decision by myself to me.

Measdbh: It means helping and supporting another person making a decision, without making it for them by
• showing them different options
• the consequences of certain decisions and how well certain decisions will turn out
• and supporting them through the decision instead of making it for them

Theresa: Every day decisions from the big decisions of
• how I choose to live,
• where I live,
• who takes care of me
• who helps

All the way to small decisions like
• what are we having for dinner today,
• would I like to go for
• a walk
Simple as that and as big.

Measdbh: Even things as little as deciding on what feed my horse is gonna get for the day, we need to discuss it and talk through you know. We both have different opinions on what we think he needs for horse food, but we come to an agreement and then we decide together.

Theresa: Sometimes I need some help for someone just to remind me that if I want to ride the horse it's always a good idea for someone to be with me.

Part of supported decision-making in my daily life is things like that, reminding me of the little things that my brain no longer takes into consideration.

Gradually we just embedded it into the way we live our lives so that all the
decisions are more cooperative now than me just making every decision
by myself.

I could no longer be the head of the family in the same way, but with support I can certainly maintain the role at the best I can.

Supported decision-making was a journey of knowing and understanding the people that I was making these decisions with. The people who were supporting me got to know me in a way that was probably deeper than I expected.

It's about giving the person with dementia the opportunity to express their wishes in the best possible situation.

Often the decision may need to be broken down into discrete parts to help us to make it and to make that bigger decision in stages.

Measdbh: I always have to be on the ball to remind her a lot, but I'm prepared to do that and help her just live life as normally she can.

Theresa: Supported decision-making is not new. It's something that we do every day in our lives with everyone in our lives, whether they're older, younger, disabled or at any type of disadvantage.

Social engagement, engaging with people, engaging with your family: it's important. It's how you build your relationships.

I'm very devoted to putting the word out there that there is more to dementia than compassion and concern and well-meaning.

You can engage. You can still engage quite far into the disease. You can still get snippets of the person that can help you guide a decision and I'm very passionate that that gets out there and that people are helped

Measdbh:We spend more time together now. We do more things together at home. We spend time with the animals together. Even though my mum has dementia and she's not well she is by far the most incredible mum that I could ever ask for.

And things like that should not affect how a person is treated or even things like decision-making. Decisions shouldn't be made for her. She should be helped in making her decisions.

On-screen: Cognitive Decline Partnership Centre

Identify options

What are some of the options?
Check you are not narrowing the possibilities based on stereotypes or limited experience.

Noah’s story

Noah lives in a group home. He doesn’t use many words. Noah loves his food.

Each week, Noah and the other residents take turns picking meals. This helps Noah try new foods.

Napat, a support worker, helps Noah choose dinner using pictures. Noah points to a photo of the food he wants.

Napat takes photos of meals Noah enjoys and adds them to her collection. This helps Noah have more options.

Noah is becoming more confident in making decisions. He's happy when he gets to choose his dinner.

What information does the decision-maker need?

Look for sources of information you trust. Compare different sources.

The supporter may help to make the information easy to understand.

You can use different ways to collect information. For example

Use what you already know
Search the internet
Use easy-read information
Talk to people who have made similar choices
Ask experts for advice
Try out options if possible
Make a list of options