Chris Maddocks and Rachel Thompson both know a lot about dementia. Chris was diagnosed with vascular dementia six years ago at the age of 60. At the time she viewed it as a death sentence, but the Alzheimer’s Society saved her and when she became one of their ambassadors, she discovered hope and a renewed sense of purpose.
However, when Covid struck in the spring of 2020, it brought her life to a sudden stop. Lockdown brought back the terror and panic of her diagnosis, the sense that everything had been taken away. To complicate matters still further, during the pandemic Chris’s diagnosis changed to that of Lewy Body Dementia.
It’s a form of dementia that was virtually unknown until the beginning of this century, though the Lewy Body Society – set up in 2006 – describes it as the second most common form of dementia after Alzheimer’s disease.
Rachel Thompson is an Admiral Nurse, a dementia nurse supported by the charity Dementia UK, and she specialises in Lewy Body dementia. Although this form of the condition accounts for roughly ten to fifteen percent of cases, it is still underdiagnosed and misunderstood, and a large part of Rachel’s role is to increase awareness of this lesser-known disease and offer expert clinical advice.
And it was when Chris was struggling to find any support after being told she had Lewy Body disease that she was put in touch with Rachel – and for the first time since her diagnosis it all began to make sense.
Rachel helped Chris and her partner Heather to develop coping strategies for Chris’s symptoms, which include loss of taste and smell, difficulty with co-ordination, sleep problems and balance issues. And as with all Admiral Nurses, Rachel also offered the couple support with emotional and psychological issues.
For as well as the challenges of Chris’s dementia, the pair encountered discrimination as a lesbian couple. They had to contend with what they describe as double stigma: both for Chris’s dementia and for their same-sex relationship. Rachel gave them the confidence to be more open about their status.
Chris’s partner Heather put it very well when she said that Rachel’s strategies have taught her not to get hung up on the little things because they don’t matter. What matters, she says, is the time that she and Chris have together.
