Jolyon is a retired banker who was diagnosed with Alzheimer’s disease in 2018. He shared his personal experiences of early stage dementia at Bell House’s Dementia Day, along with his wife Jean. He believes that the more he knows about the disease in advance, the better he will cope in the future - but he emphasised that each individual will approach this differently.
His first decision was about who to tell. He and his wife decided to share his diagnosis widely and reach out for whatever support could be made available. But he asks the question, “whose diagnosis is it?” His view is that in many ways it’s one for the whole family because of the impact it has on everyone.
Jolyon has read everything he can find on dementia and he goes along to the Primrose Dementia Cafe. He’s also active in the local walking sports centre. “I also put myself down for clinical trials… and I’m helping University College with work around communicating a dementia diagnosis to others.”
Despite naturally being a very organised person, Jolyon knew he needed to get even more organised in advance after his dementia diagnosis. He has arranged a Lasting Power of Attorney, made an Advanced Statement, and told people who need to know about his diagnosis such as the bank and the DVLA.
Jolyon was taking some medication for the Alzheimer’s but one of the side effects was to accentuate a pre-existing tremor, and so he sometimes takes a break from it.
Throughout all of this, Jolyon emphasises, the support he has received from The Alzheimer’s Society has been invaluable, especially in sharing information resources about the disease.
As an early stage sufferer the big mental challenge is facing the future. It can be hard. “Our daughter has been wonderful and, at her encouragement, we are moving to be nearer to her.”
Jolyon’s wife, Jean, had noticed his forgetfulness and changes in his normal personality and knew something was wrong. For her, the dementia diagnosis was a “huge relief” as it offered her an explanation for the uncharacteristic, and at times quite upsetting, behaviour. “Sometimes he gets agitated, and my strategy then is just to give him space.”
The journey so far for Jolyon and Jean has been difficult at times and they expressed great courage and openness in sharing their experiences with Bell House attendees.