Early onset dementia is a condition that has seen a lot of media coverage recently.

Earlier this year, Julianne Moore won an Oscar for her portrayal of a renowned linguistics professor who develops early onset dementia and, in March, celebrated British author Sir Terry Pratchett died at the age of 66, eight years after being diagnosed with the condition. To find out more about the reality of the condition and how best to support someone who has been diagnosed with it, we spoke to York-based job coach Ramsay Taylor, who shares his unique perspective of supporting a 58-year-old gentleman named Pete.

Pete was diagnosed with early onset dementia seven years ago. While he’s still quite early on in terms of the progression of his condition, there are times when he pauses and loses track of what he was saying. Tasks like making a cup of tea can also prove challenging as he gets distracted easily and can forget the order in which to do things.  

Pete is very keen to continue working as well as on with everyday activities, so I’ve been supporting him with exploring employment opportunities for about two months now. He also sees two personal assistants from another organisation three days a week to focus on socialising.

Supporting Pete back into work

I visit Pete at his home for an hour a week, and I’m in constant contact with his family and wife to share information, discuss his progress and get background information on him. This creates that essential ‘support circle’ for Pete and ensures we’re all singing from the same hymn sheet.

One of the things that his wife likes about this support is that once a week – every Monday at the same time – we sit down together and spend one concentrated hour on work-related activity. Having that focus really helps.

We look at Pete’s past experiences and see what he’s interested in, what his current skill set is, and if we can find any connections with what he used to do for work. Then I make a plan for the week and head off to identify the right opportunities.

Pete is very enthusiastic about the church, so I’ve mainly been looking at opportunities at York Minster. They have come up with a short list of voluntary jobs he could do, such as working in the library, and the plan is to try each one and see which one Pete has the most success with and enjoys the most.  

When looking for employment possibilities for people with early onset dementia, you have to be open-minded. It’s also a good idea to think laterally, so it occurred to me: ‘Why not use the dementia as a way in?’ The Minster want to make some of their tour groups more dementia friendly, so we’re exploring the option of Pete doing some consultancy work for them – something that he’ll hopefully also be doing with his local church.

A delicate balance

The bulk of my experience up until now has been of supporting people with learning disabilities into work. The key difference between Pete’s support and that of someone with a learning disability is the fact that his condition worsens over time.

For someone with a learning disability, you can keep increasing the challenge when it comes to employment because skills can be learnt with the right support. But for someone like Pete, who has early onset dementia, the job needs to stay at the same level, with scope for it to decrease in complexity over time, mirroring his ability.

The key is achieving a balance of not patronising him, but also not setting him up to fail – as, in the long run, his capability will gradually decrease. And then you have to identify what support is needed in the job, and it’s important to be honest with the employer and give them the full picture.

Challenges and rewards

The biggest challenge when supporting Pete is around communication: understanding what he wants and what he means. You have to really focus and listen to everything that’s being said; you can’t take a guess or zone out because, camouflaged within one long and detailed speech, there will be one key sentence and that’s what he’s trying to say – that’s the point he’s trying to make.

Establishing a good relationship with and understanding of the person is also important, as is being able to communicate in the right way; for me and Pete, that’s being comfortable enough to ask him to start again if I can’t understand what he’s saying. The person really needs to trust you, and that can take time.

It’s crucial for people with early onset dementia to keep active. I imagine the condition worsens a lot quicker if you’re not doing anything, not challenging yourself and not putting yourself out there in social situations. So for Pete it’s vital that he keeps busy, takes part in activities and groups, sees people and engages in employment opportunities. All of that is only going to help his condition and improve his quality of life.

Ramsay was talking to Anna Nathanson, design and communications assistant.

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