In this five-part series, neurologist Jules Montague and William Miller go into the homes of people with rare dementias, to discover that dementia is not what we think it is. Click here to listen to the episodes.

The series features RDS members Geraint and Jacqui discussing frontotemporal dementia, Dave and Gill talking about Lewy body dementia, Susan and Terry explaining posterior cortical atrophy, and Jo talking about semantic dementia.

Nikki Zimmermann, RDS Direct Support Team lead, was delighted to be involved in the project, introducing the presenters to RDS members. What most pleased Nikki was hearing the voices of people actually living with these conditions, and describing the empowered lives they are living. “At RDS we strive to get voices heard, and support and empower people to live their best lives”. Presenter Jules Montague kindly acknowledged Nikki’s huge contribution to the series, writing on Twitter, ‘Outstanding help from Nikki Zimmermann whose passion for getting these stories out there is incredible. This series would not have happened without her’.

Many of the contributors spoke about their attitude to living in the moment. In Jo’s own words, “I think much more now of what I love in life and my motto everyday is ‘Carpe diem’. I now focus on what gives me joy and happiness in life”. Similarly, Gill told listeners, “We live for the now. Treat yourself kindly when you admit to yourself this was not on your bucket list”, with her husband Dave encouraging others in a similar situation to “Carry on with living life. Don’t stop and don’t put things off”.

Another frequently raised topic was the importance of peer support, especially for sharing and discussing experiences or views that might seem unexpected given prevailing stereotyped attitudes to dementia. Susan noted, “My main support is RDS and we have a monthly peer support group on Zoom. The most important thing is to speak to others with the same condition… It sounds really silly because I feel fortunate I have PCA and I still know what’s going on. I feel fortunate in many ways as we still live a normal life. We have had holidays recently and we have just booked a cruise. We have to count our blessings.”

The series also underlined the huge impact of dementia upon relationships, especially in conditions such as frontotemporal dementia. As Jacqui expressed, “I feel I don’t have a companion anymore. I have lost the chance to make memories because Geraint doesn’t want to participate anymore, so you can’t make memories.” Geraint himself reflected, “You feel yourself drifting away, you feel further inside your body and away from everyone else. You get used to it and you make coping mechanisms, but I worry about Jacqui as it seems so burdensome and unfair”.

Presenter Jules Montague captured the reality that dementia is not a condition that affects individuals but rather families, friends and communities as she concluded, “Everyone wanted to tell their story and wanted us to listen. I was heartened by the ties between people. It reminded me of an old Irish saying which translated means ‘Under the shelter of each other, people survive’”.

Background to the series from the BBC website:

It’s a common misconception that dementia is a condition that only affects memory, but Alzheimer’s is only one form of dementia: there are many more. Because the symptoms of rare dementias can be so atypical, often in younger people, those with rare dementias wait twice as long for a diagnosis and a third are initially misdiagnosed.

The symptoms of these dementias go far beyond memory loss. William and Jules meet a man who hallucinates cats and rabbits in his living room, a novelist who is losing her words, a former teacher who cannot see what’s right in front of her, and a family struggling with a genetic legacy that has defined their past and could determine their future.

Dr Jules Montague is a dementia specialist, and William has personal experience of its impact, having cared for his father, theatre director Jonathan Miller, who died of Alzheimer’s in 2019. Together they explore the science behind the symptoms and the poignant and extraordinary ways in which families navigate their lives as a result of these conditions.