“This is the first time that dementia is a political priority, creating drivers for focusing on all aspects of dementia, from the anti-dementia drugs, to an increased knowledge about potential risk factors and preventions strategies as well as innovative ways to provide high quality support and care.”

“I think it’s really important to stay in communication with us, as human being to human being – because we are still human beings with a spirit. And it’s spirit to spirit that we can really stay in touch.”

“When I first started, there was no support for people with dementia, as it was assumed we lacked insight. Indeed the words of an Annual Report in 2000 of an Alzheimer’s Association spoke of us as being “mindless empty shells”. At first when I spoke up, people did not believe I had dementia because I could still speak. They said that even if I was showing the early signs, I was not a credible representative of people with dementia because of my level of function. Yet since then I have met so many others who have this diagnosis who are speaking out… We are receiving so much support and encouragement, and we are being listened to and respected. By treating us as experts in what it feels like to have a diagnosis of dementia, services and support are being much improved.”

“Touch is one of the most fundamental ways to offer support and caring and is often underestimated or disregarded in healthcare settings… A hand massage is a wonderful, easy introduction to using touch. From a caregiver’s perspective, they often feel disconnected from the person who is ill or weary of touching them, so it’s a wonderful way to approach the ill person and provide care in a manner that is satisfying to the ill person and to the caregiver, and safe.”

“It was an exciting time, because it felt like a real movement in personal well-being was taking place. It wasn’t being led by doctors, but by ordinary people who were looking for more than symptom relief. They wanted therapies that were natural and non-toxic, and a way to be involved in the healing process. That was a key—becoming an active participant in wellness and illness instead of being a passive recipient of care. The quest for ways to be involved in the healing process, and for tangible ways to share it, became the continuing thread of my studies, writing and teaching.”

JKP is exhibiting at the Frankfurt Book Fair this week. Jessica Kingsley took a few minutes between meetings to talk about why we attend this major international event, and to highlight some of the things we’ve been talking about.

“People with dementia continue to have decisions about them made by other people who bring to that decision their own views of safety and risk – these can be very profound decisions such as where someone will live in the future. It continues to be essential to develop services that respect the views of people living with dementia so that the care they receive is of high quality (and this is not necessarily care that is ‘risk free’).”

This month, we offered one of our readers a chance to preview a copy of the Revd Jewell’s latest JKP title, Spirituality and Personhood in Dementia, and ask him some questions about it: “Q: To what extent and how far has your exploration of dementia enhanced your understanding of spirituality? A: …People with dementia in the main live in the present moment because the past tends to get dismantled. To be able to live fully in the present, rather than be bugged by the past or worried about the future, is a great gift and one I covet…”

In this video series, Michael Mandelstam talks about his new book, How We Treat the Sick, which shows beyond question that neglectful care is a systemic blight, rather than mere local blemish, within the UK’s health services. In the book, Mandelstam analyses the causes and factors involved, reveals the widespread denial and lack of accountability on the part of those[... read more]

“From infancy to old age, the recall of personal memories serves to establish identity, safeguard self esteem, assist communication, enhance relationships, and preserve and transmit personal, family and community history. By valuing memories people are helped to value themselves when developmental challenges, current circumstances, transitions, failing health and increasing age assail us.”