Barbara and Rob Perry’s story: the inspiration for This is Dementia

However, it was when Rob reached his mid-50s that the changes started. “He was becoming withdrawn, clumsy and not enthusiastic about things but he just put it down to being tired or stressed at work and wouldn’t see a doctor”, Barbara mentions. Concerns in the family deepened after his work actively supported him to retire. Could it be that others were starting to notice the changes in him too?

Rob’s diagnosis

The situation escalated rapidly following Rob passing out after going to the gym. He had a scan which showed that there was something wrong with his brain. It took a year from this point until Rob was diagnosed with frontotemporal dementia – at the age of 57.

“It was as if our world had crashed around us”, Barbara remembers. “Even though we were expecting bad news it was still hard, especially as we were told there was no cure or drugs to slow the condition down. Rob was shell-shocked and the diagnosis really knocked his confidence.”

Rob and the family were determined not to let this stop him from doing the activities he enjoyed, like taking their dog Nova out for a walk. But this proved really challenging as the changes in Rob’s brain would cause him to stare at people. Did he know them or not? The confusion increased when some people were aggressive towards him when he couldn’t answer why he was staring. He would come home upset which would place strains on the family as well as him.

The inspiration for This is Dementia

Rob’s daughter, Elizabeth, wanted to do something practical to cope with her dad’s diagnosis and to support him. She came up with the idea of making a t-shirt stating her dad has dementia and urging people to be mindful of how they interact with him.

Raising awareness of young onset dementia

There are an estimated 42,000 people with young onset dementia in the UK; the effects are significant for people of working age who may also have children in the house and who need to keep on top of mortgage payments. For Lizzie, it has been particularly important to raise awareness of this type of dementia. This is Dementia started for this very reason as well as to help raise funds for Dementia UK’s Admiral Nurses.

Barbara was in fact supported by one of Dementia UK’s Admiral Nurses. After Rob’s diagnosis, she was struggling to find the right information and people to support her; she had given up work and quickly realised she needed to adapt emotionally to become a full-time carer for Rob. Things had the potential to quickly snowball, but Barbara soon came upon a leaflet about Admiral Nurses. She quickly asked for a referral.

Meeting Admiral Nurse, Tracey Lee

From Barbara’s very first meeting with her Admiral Nurse, Tracey Lee, back in 2018, she knew she would help her with the overwhelming emotions she was experiencing about her family and her future. “She calls every two weeks to see how I am but I can call her whenever I need to. As she is not a member of the family or a friend, I feel I can tell her the truth; that sometimes I feel lost, lonely, scared, angry and guilty. I’ve lost my best friend and as Rob is no longer able to converse or interact, it’s often feels like I am living with a shadow.”

It’s not just the emotional support which Barbara wants to stress but the practical support from Tracey too from guidance around making the decision to bring carers in to help out in the morning, to helping her source respite care for Rob, to introducing her to a group of carers to help her see that she wasn’t alone.

After asking her how she would have coped without Tracey, Barbara says: “Without Tracey, I am pretty sure I would be on anti-depressants by now and the relationship between me and Rob would be very fragile. It’s important for me to have someone independent to talk to. I know that without her I wouldn’t be able to cope at all and I need to cope as Rob needs me. I love him and he is my best friend, I need to be there for him.”

Tracey Lee, their Admiral Nurse said: “My role as an Admiral Nurse is to be that independent, non-judgemental, caring voice that gives Barbara an opportunity to talk openly and honestly about the impact of caring for Rob on her and her wider family. This all helps to build her resilience.

“Barbara has had to make huge adjustments due to having to retire from work early, accepting the diagnosis and coming to terms with the caring role. We have also discussed future planning, feelings of guilt and preparing for changes in Rob’s needs.

“It is a privilege to work with Barbara and her family who are trying their best to cope with a very challenging and stressful situation.”