Early-onset dementia diagnosis at 37: ‘It tore our family apart’

"Anna started showing behaviour changes when she was 36," writes Anna's mother. Photo / Facebook

Caroline Preston recently shared in a Telegraph article the crushing impact that her husband, Mark’s, dementia had on her and her family’s lives and how she plans to raise awareness.

Following Caroline’s moving story, Telegraph reader Christine Reddall, 72, who lives in Leicestershire, has shared the harrowing story of her own daughter, Anna, who was diagnosed with behavioural variant frontotemporal dementia (BvFTD), a merciless form of dementia, aged just 37.

In light of World Frontotemporal Dementia Awareness Week, Christine speaks of Anna’s diagnosis, her devastating deterioration, the all-consuming effects on the family and the challenges she faced:

“Anna started showing behaviour changes when she was 36. At the time, she was working as a research cancer nurse. Anna was a very experienced, dedicated and compassionate nurse destined to go far.

Christine Reddall belongs to a number of carer support groups to help raise awareness, and supports researchers who need the help of carers to guide their research projects. Photo / Facebook

She started behaving out of character — becoming disorganised, rude, loud and lacking compassion. At home, she was screaming, banging her head on the wall and constantly eating food high in carbohydrates. Unable to control her behaviour, she became unable to work.

Her husband was beside himself with worry, her two young sons were scared — and none of us knew what was going on.

Anna was very reluctant to go to the GP. Once there, she denied anything was wrong. She didn’t look ill, and at the doctors, she seemed able to control her behaviour. The GP diagnosed stress and depression and prescribed antidepressants and time off work. Anna would not accept this and tried to go back to work. She kept saying there was nothing wrong, yet her behaviour was getting worse.

‘Brains did not shrink in 36-year-olds’

About six months after noticing the behaviour changes, Anna was admitted to a psychiatric unit. She was assessed and sent for a brain scan.

A brain scan revealed “global shrinkage” of her brain. The doctors told us it wasn’t that unusual and was probably caused by meningitis which she had suffered several years before. However, as a nurse, I knew there was something very wrong. Brains did not shrink in 36-year-olds.

That year, 2012, Anna bounced between psychiatry and neurology with neither speciality coming up with any revolutionary answers — all other tests came back normal.

There was a wonderful breakthrough halfway through this year when a new doctor came up with a probable diagnosis of “Pandas” (paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections), which is a disease that this doctor felt could happen in young adults. Treatment for this proved inconclusive and we were plunged back into despair.

In my work as a Macmillan nurse, I had come across a patient with Pick’s disease (the previous term used for FTD). Putting all the pieces together, I realised that this was what Anna had. I told this to her consultant who looked at me and said “she is far too young to have that”.

“In September of that year, we found out what her diagnosis was. A strange word to use, but I count myself ‘lucky’ that both Anna and I were part of the NHS and I knew my way around the system. The consultant of Anna’s team helped me get her transferred to the London Neurological hospital.

I stayed nearby and went to the hospital every day to sit with her as she underwent a barrage of tests. Everything came back normal. She had no memory loss and it seemed as though her intellect was intact.

"Despite denying anything was wrong, Anna’s behaviour showed that there was something very wrong". Photo / Facebook

Despite denying anything was wrong, Anna’s behaviour showed that there was something very wrong. She wandered around taking food off other patients, banging on walls, walking into the kitchen and demanding her meals. When in her room, she had the curtains closed and the covers pulled up over her face. I sat with her every day in the darkened room. She wouldn’t offer any conversation.

A few days into her stay, Anna underwent an MRI. I was allowed in the room with her as she was so restless.

As a nurse, I had been in the room where the MRI images were shown on the screen. As I sat with Anna, I could see into this room and I saw the flurry of activity that was happening in there. Doctors being called in. It was then that I knew there was something very wrong with my daughter.

Her husband was called in the next day and we were given the devastating news that Anna, aged 37, had BvFTD and her life expectancy was between two and five years.

‘I didn’t cope, I existed’

Approximately four weeks later, Anna was transferred to a nursing home. The effect on her whole family was massive, all consuming. I didn’t cope, I existed. Our family tore apart. From being a happy and united family, we were suddenly arguing over what was happening to Anna. There is no blame apportioned to either party — we were dealing with something so profound, so unbelievably off the scale of anything any of us had seen before. And we struggled. We were no longer able to communicate with Anna’s husband and this had a huge impact on our grandsons.”

“Social life became non-existent and we had to force ourselves to take holidays to help us stay sane. Strangely, I continued to work — reduced hours. I felt whilst I was helping others, I could ‘detach’ from my own sadness.

There were so many huge challenges. Difficulty getting a diagnosis, lack of awareness of the disease among the medical profession, lack of support, care home staff not equipped for or familiar with BvFTD, friends and family ‘backing away,’ what to tell the children, family breakdown.

The most devastating and heartbreaking challenge was the fact that Anna lost the ability to communicate. We never again had a meaningful conversation with her. We had to guess her needs and guess how she was feeling — and hope we were doing the right things for her.

“Her behaviour was so unstable that she was soon on one-to-one care and she never left the care home.

“Anna died four years after she was diagnosed aged just 42.”

Christine was a community Macmillan nurse for 29 years before giving up when Anna died in 2017. She now spends a lot of time trying to support others. She belongs to a number of carer support groups to help raise awareness of behavioural variant frontotemporal dementia, and supports researchers who need the help of carers to guide their research.