Connecting with hope for people with younger onset dementia

Receiving a diagnosis of younger onset dementia can be a stressful and emotional time for a person and their family. Typically defined as any form of dementia in people under the age of 65, younger onset dementia can bring with it a different set of challenges compared to dementia that may develop later in life.

To help improve the quality of life for people with younger onset dementia and their partners, our Adult Speech Pathologist Ffion Walker runs IMPACT (Individuals Meeting with Progressive Aphasia Communicating Together). IMPACT is a group with a focus on speech therapy that provides a safe, inclusive space for people to access support and connect with others.

We spoke with Ffion to find about more about her work with people with younger onset dementia, and how we can better support those living with the condition.

What is IMPACT and how does it work?

IMPACT is a group I facilitate to support clients with younger onset dementia, as well as their partners. The group is split into two groups – one group is for the clients who are living with dementia, and the other group is for their partners. We’ve done it this way because there are different issues that we need to address for both groups, and we need to create a space for partners to feel comfortable in truthfully telling us how they’re managing their experience.

For people with dementia, the group supports them in conversation and helps them to access memories related to a topic. We might pick a topic like hope, grief, or memory, and then we’ll look at some ideas around that and their experience of it. The participants help each other, and encourage each other, and I think that in itself has a therapeutic effect. There’s a sense of connection and belonging, that they’re part of something that they can contribute to, which I think is a really important part of the group.

How can people join the group?

Group participants are all my Speech Pathology clients. I will do individual consultations with them and their partners, and then assess if they might benefit from attending the group. Some people won’t suit a group environment, but others will do really well.

Normally the group is held face-to-face, but during lockdown we’ve held online sessions for the partners so we can still be there for them as a point of connection and support until we’re allowed to see them in person again. It is difficult to run the group online for participants with dementia, as it isn’t as easy for them to engage virtually, but we try to be there for them as much as we can to provide support and advice.

How does the group benefit people with younger onset dementia and their partners?

For the participants with dementia, it’s helps them to build confidence. Many people with dementia often don’t engage in social conversations as they lose their ability to communicate, so it’s great to be able to ask them a question and get their opinion on something. The group enables them to actively participate in a conversation, even if their communication is impaired. It’s also a very safe, supportive space. For instance, if someone has difficulty remembering a word, everyone is patient. Nobody is judgmental because they understand what each other is going through.

For the partners, one of the key benefits is the support they get from others in a similar situation. Their scenario of being in a relationship with someone with younger onset dementia can be quite rare, so to be able to share very openly about that struggle and get support from others in a similar situation is hugely therapeutic. They can also ask questions and get some helpful advice and ideas, either from me or from each other. It’s a real peer support experience for them.

Do people with younger onset dementia experience the condition differently to those who develop dementia later in life?

People with younger onset dementia tend to experience different types of loss to those who may develop dementia later in life - I suppose it’s the loss of a future they hoped to have. They may have had plans to reach certain career or personal goals, or may have recently married for a second time. Many of the clients I see are diagnosed with dementia while still working in successful careers, and end up leaving their jobs as their condition advances. Quite often they feel embarrassed and afraid to tell people they have dementia. Some people are diagnosed while they still have dependent children, and have to negotiate being a parent while dealing with the effects of the condition, such as memory loss and impaired language skills.

What’s your advice for clinicians on how to support people who have been diagnosed with younger onset dementia?

There’s so much stigma around the fact that dementia is a progressive disease. It’s often perceived that there’s nothing you can do and no way to help, so people with dementia and their families are frequently left to deal with it by themselves. There’s a book by Wendy Mitchell called ‘Somebody that I used to know’ about her experience of living with Alzheimer’s, and it includes this quote: “Dementia has a beginning before it has an end, and so much life to live in between. We’ve got so much to give, we just might give it in different ways, so don’t give up on us.”

I think that’s the message that we need to give people. People with dementia are genuine candidates for treatment. We’ve got to be more creative, and more sensitive in addressing the complex issues of dementia so that we can provide the support that that people with the condition need, not just now, but into the future. Just as we do with other chronic health conditions, we need to assess them and continually monitor their progress to ensure that as their condition changes, we adapt to those changes.

When it comes to dementia, don’t take away people’s hope. If we can deliver a dementia diagnosis with a focus on treatment and support options available, then we can help to retain a person’s capacity to flourish as a human.

Find out more about our Speech Therapy services.