John Jennings was devastated when his mum was diagnosed with a rare hereditary form of Alzhiemers, but a single call helped to change things

My Alzheimer’s story is quite an unusual one. We have one of the extremely rare inherited forms of Alzheimer’s in our family – my grandfather was one of five siblings who developed the disease in their 40s or 50s.

That meant that my mum – an only child – had a 50-50 risk of developing Alzheimer’s at a similar age. Even though we always knew the risk, when mum started to show symptoms just after I had left for university, none of us really wanted to admit to it.

Her personality seemed to change first of all, and then her memory of social events and the names of my friends. When the first diagnosis of mild cognitive impairment came, it was devastating. I was living away from home, I was worried about supporting my dad, who still works fulltime, worried about how quickly symptoms would go downhill, and selfishly worried about myself too. In the pit of despair, and with more than a few tears, I called the Dementia Helpline for the first time.

The long process of losing someone you love, and knowing that I’m now at risk too, was scary at first, but being able to talk to someone gave me the confidence to think about dementia in a more positive light

I felt that I couldn’t overburden my friends with this huge thing that was happening in my life – and men don’t really talk about these things anyway! But it is easy to feel isolated when you have to face something like this alone. It’s so good to know that there is someone on the other end of the telephone who is happy to just listen, and understands just how horrible this disease can be.

The long process of losing someone you love, and knowing that I’m now at risk of developing the disease too, was scary at first, but being able to talk to someone at arm’s length gave me the confidence to think about dementia in a more positive light. I’m now much happier to talk out about the disease and spread the word – we can all fight this together.

From being scared to even talk about it, I went to speaking on behalf of our family at the Alzheimer International conference in Toronto last year and have volunteered to be involved in research. Quite a turn-around!

The second time I called the helpline, I was looking for more practical tips. As mum has lost her use of language and is prone to wandering around the house, it is sometimes difficult to do activities with her or engage her for long enough to feel like you’ve made a meaningful connection.

The lady I spoke to on the Dementia Helpline suggested colouring, and after we spoke for a little while about my mum, we also thought of jigsaw puzzles as a possibility. The next time I visited mum, we put on some of her favourite music and finished a puzzle of Tobermory seafront together. She isn’t able to do puzzles any more, but I have now got such a happy and positive memory of us enjoying some time together because of that. Thank you Dementia Helpline.

Call the 24-hour Dementia Helpline on freephone 0800 808 3000 or email [email protected]