We need to start talking about young-onset dementia

“I’ve met people as young as 30 suffering from dementia,” Janet shares. “It’s a heartbreaking reality, and yet we’re not talking about it.” 

According to the NHS, dementia is “a syndrome associated with an ongoing decline of brain functioning”. A common misunderstanding is that dementia is something just the elderly suffer from. But Janet asserts that dementia is a growing issue among younger people, with increasing numbers showing signs of early-onset dementia from as young as 30 or 40. “That said,” she adds, “research shows that some forms of dementia are preventable,” a statement that is both devastating and hopeful. Janet is motivated by these two emotions, eager to relieve the devastation and improve the quality of life for young sufferers of dementia, while also being a voice of hope for the future. 

Home from home

Janet started her career as a mental health nurse, supporting patients in care homes and the community, and specialising in dementia care in 1995. “I knew I had a gift, a special way with people suffering from dementia. Despite being very forgetful, they would always know who I was when I came in,” she shares. “I wanted to make life as comfortable and as normal as possible for them, and I struggled to see how the average large care home could provide this sort of person-centred support.” Janet became captivated by the prospect of opening her own care home: it would be small, bespoke and personable; it would put the individual at the centre and feel like a loving, supportive family; and it would accept the sort of individuals that no one else wanted to look after. 

With no money, Janet needed to prove to the bank that her vision was worthy of a loan. So, in 1995, at the age of 28, she relocated from Epsom in Surrey to the West Midlands in order to afford a larger property and started a care home in her own house. “I took in three residents and cared for them at home. They became part of the family – exactly what I felt a care home should be like.” This all happened decades before Janet became a Christian. She would go along to a local church from time to time, appreciating the value of Christian morals, but knowing nothing about the vibrancy and transformation of a real relationship with Jesus. “Looking back, I can see how God was working in my heart all along,” she reflects. “He put this desire in me and made it part of who I am. I have no idea how I managed without him for so long. The start was overwhelming and stressful, but somehow I kept going.”

In those early days she was based in an old Victorian, three-storey house, with her husband, two young children (three and four), two women in their 70s with dementia needing round-the-clock care, and Jim (72) who had dementia and was also blind. She was also pregnant with her third child! During this time, Janet still worked for the NHS, bringing in other carers to help with the residents during the day and a nanny to help with the children. But despite the extra hands on deck, this was an all-consuming time in her life. “A few days before I gave birth to my youngest, Katie, one of the female residents slipped in the hallway and was admitted to hospital for a hip operation,” Janet recalls. “She was discharged back to my care when Katie was only days old. I remember getting up every two hours in the night to help this lady, while carrying newborn Katie in the sling. I don’t know how I did it!” 

It was a gruelling and costly season for Janet, contributing in part to the breakdown of her marriage. But her commitment and gifting crystalised, and with the support of her business-minded father and a bank loan, she sold her house and purchased her first small care home for eleven people, moving in with her young family and renovating it into the care home she’d dreamed of. 

A gap in care

Janet’s care home was distinct, with only eleven residents and specialised, personable care. But it was regular in the sense that it served predominantly older residents. It was during this time that Janet met Rachel*, one of her community patients. Rachel was only 54, with two school-aged children, and already suffering from a form of alcohol-induced dementia. “Eventually, she was placed in a regular care home where the majority of residents were over twice her age,” Janet explains. “I found it really sad to observe. She still had so much of life to live, and this care home wasn’t able to make life enjoyable or stimulating for her.”

dementia is a growing issue among younger people, with increasing numbers showing signs of early-onset dementia from as young as 30 or 40

Janet knew Rachel wasn’t a one-off case and felt compelled to respond. With her first care home a success, she remortgaged and bought another property, turning it into the first specialist home for people with young-onset dementia. “I wanted to create homely environments where I would want to live myself,” Janet shares, revealing how she poured her heart into these homes. “Residents should be able to live their lives, still encouraged to do the things they enjoy, while continuing to engage with their community.”

It is this drive for community integration and engagement that has inspired Janet’s latest venture: a hair and beauty salon specifically for people suffering from dementia or mental-health challenges. This will be a resource and refuge for residents of Janet’s four care homes, as well as a hub for those in the community who find day-to-day tasks, such as going for a haircut, difficult or inaccessible.  

Discovering a voice

For a long time, Janet has been convinced that certain forms of dementia can be prevented. “Experts, such as Dr Dale Bredesen, clearly show the links between poor nutrition, lifestyle and the onset of Alzheimer’s disease,” she explains. “We are also seeing a growing number of residents with alcohol-related dementia. It’s so important that we start educating young people about this and promoting the benefits of a healthy diet and lifestyle.” With a growing waiting list for her care homes, as

more working-age individuals seek support for dementia, Janet describes the problem as “an epidemic”. She wants to do all she can to address the root causes, and help prevent more young people from suffering. 

Alongside purchasing the beauty salon, Janet has invested in a retreat and education centre, setting up her own non-profit organisation called Wigwam Wellbeing. This venue will provide education opportunities to the public, as well as being a sanctuary for those suffering from dementia or mental-health challenges, alongside their families and care professionals. “The families of those suffering from dementia can often be overlooked. Sometimes they can be managing really challenging behaviours while also having to care for a young family. It’s really important to find companionship, if you find yourself in this situation. You need to know you’re not alone.” 

The motivation and inspiration for Wigwam Wellbeing comes from an overflow of Janet’s relationship with Jesus. “It was just before the pandemic when I started randomly listening to Joyce Meyer on YouTube,” Janet shares. “What she was saying really resonated…I ended up going along to a church near me and after a while went on the Freedom in Christ course. My life changed altogether.” 

Thirty years on from when she first took three patients into her home, Janet’s vision is morphing and changing, as she thinks ever more creatively about holistic care and how to raise a voice of hope and change when it comes to preventable young-onset dementia. Her story is covered in God’s fingerprints; you can see his heart in her pioneering and sacrificial vocation. “Becoming a Christian has made sense of everything that has happened in my life so far,” Janet enthuses. “And the future has more purpose and vision.”  

*Name changed

Find out more about JW Care Group and young-onset dementia at jwcare.co.uk 

Words by Jane Knoop