I am delighted to have joined Unforgettable as Caregiver-in-Chief, and I am very much looking forward to making a significant contribution to the mission of the company: to improve the lives of people living with dementia, their families and caregivers.
I have family experience of dementia dating back to the mid-1980s, when society’s general understanding of the condition was poor, and the approach to caring for people was far different from now. In those days, people with dementia were not recognised as ‘people’; rather they were defined by their disease, their voices rarely heard, their needs seldom met. That people with dementia might have feelings, desires, wishes was simply not considered.
Thankfully, the landscape is different now: awareness of dementia is widespread and major advances have been made by successive governments to raise diagnosis rates, improve post-diagnosis support, help people live well with dementia and promote skilled and compassionate end-of-life care. The economic value of family carers is now recognised and services to support family carers are available in most localities.
People with dementia are encouraged to speak out about their experiences and give voice to their needs. ‘Co-production’ is a watchword for service planning and delivery. The work of the dementia charities, the Dementia Empowerment and Engagement Project (DEEP) and other organisations, places the ‘lived experience’ centre-stage, both for people living with dementia and family carers.
Barbara has extensive professional experience in the dementia field, having worked for the Alzheimer’s Society, as CEO of Dementia UK, and as co-founder of Dementia Pathfinders. Her skills and expertise add a valuable dimension to capability of Unforgettable, complementing the personal experiences of our founder, James Ashwell, and advancing his mission and goals.
There is much, however, still to be done. The prevalence of dementia is rising: 850,000 people live with a form of dementia in the UK currently and this figure is expected to rise to more than 1 million by 2025. Dementia affects 20% of people over the age of 80 years; 1 in 3 people aged over 65 now will have dementia when they die. And whilst dementia is most commonly associated with older age, approximately 42,000 with dementia are under 65 years.
For every person diagnosed with dementia, a number of family members will usually be affected, including a primary carer – the person’s wife, husband, partner, sibling, son, daughter … a relative or friend who didn’t ever imagine that this was a role they would take on. Plus other relatives, friends, neighbours, the postman, parish priest, café owner, bus driver, employer, people living and working in local communities who are part of the person’s life, all trying to make sense of a puzzling, uncertain dementia-influenced future. The drive to establish dementia friendly neighbourhoods is, indeed, a movement to be encouraged.
Here at Unforgettable we recognise the power and value of peer support. We have established a closed group on Facebook encouraging family carers and people living with dementia to share their feedback about products, practical ideas, day-to-day experiences and strategies for coping.
I shall be writing a weekly blog, reaching out to the Unforgettable community, offering regular live chat sessions on our website and providing face-to-face support and advice through local meetings and events.
I look forward to getting to know you, both in the virtual world and in person. Please do get in touch, we are keen to help; and we want to listen and learn from you too.
Click here to submit a question to me, give one of your carer’s tips, or submit a blog or product ideal. I will respond to as many as I can.