Stories

Welcome to this collection of stories from our members, both in the UK and from RDS Canada. Here, we celebrate the cultural activities that people find supportive and meaningful in their lives. Each story is different and our members have also shared openly about their experiences of living with a rare dementia diagnosis.

Please select one of the stories below to read more

  • William’s Musical Memories
    William speaks with us about how music has helped articulate his experience of caring for his wife Jane, who lived with Young Onset Alzheimer’s Disease (YOAD) Can you tell us a little bit about yourself and Jane’s journey with Young Onset Alzheimer’s Disease (YOAD)? Jane and I met at University in 1978, and married in... continue reading.
  • Kate Carpenter_Kaleidoscope_VII
    Kate’s Kaleidoscope Project
    Kate speaks with us about her photographic project ‘Kaleidoscope’ and gives insight into caring for her mother who lives with PCA  Kate is a photographer, who has recently published a photo book called Kaleidoscope. It combines re-photographed prints from her family archive, with documentary images made about life in her mother’s house now.  A third... continue reading.
  • Sonya holding scans
    Sonya’s Creative Connections
    An RDS Canada member, Sonya tells us how creativity and culture continue to play a role in her life Can you tell us a little bit about yourself and the impact of the diagnosis of PCA? Before my diagnosis, I was carefree and always up for an adventure. I loved my working life because every... continue reading.
  • Caron with here embroidery Picasso face
    Caron’s textile adventures
    Caron shares her passion for embroidery and expresses why creativity is so important to her. Can you tell us a little bit about yourself and your diagnosis? I was born in North London (next to the Guinness factory) in 1949. I have never moved far from my roots and I have lived in Highgate since... continue reading.
  • Michael at Park Club
    Michael’s cultural activities
    Glenys tells us more about some of the activities that her and her late husband Michael engaged with to support their journey with Lewy Body Dementia. Can you tell us a little bit about yourself and your husband’s journey with dementia? Michael was initially diagnosed with Parkinson’s shortly after he retired. He was having memory... continue reading.
  • Helena and David smiling
    Helena and David’s path
    Helena and David share their experience of a PCA diagnosis and how they have built resilience through creative activities along the way. Can you tell us a little bit about yourself and the impact of your diagnosis? Helena: My Name is Helena and I live in Sussex with my husband David. The Impact of the... continue reading.
  • Chris and Andrea together
    Chris and Andrea, getting on with life together
    Chris and Andrea met in 1972 and were married in 1973 so this year will be their 50th anniversary together. They have two sons and four grandchildren. In this story, they spoke with us about living with logopenic variant Primary Progressive Aphasia, painting and cooking together and the other meaningful activities that they find supportive.... continue reading.