Beth Britton is a campaigner, consultant, writer and blogger specialising in issues affecting older people, health and social care and specifically dementia.
For the past few years dementia has been a hot topic of conversation, leading to a focus on caring and supporting people with dementia that was certainly never as significant when my dad was alive.
My dad lived with vascular dementia for nineteen years. He went ten years without a diagnosis while living at home, only receiving confirmation of his vascular dementia after hospital admission for a stroke that had left him collapsed on the floor. The view of his doctors was that he couldn’t return home as they felt he would be a danger to himself and others, so he spent the last nine years of his life in three different care homes before passing away in April 2012 aged 85.
In May 2012 I began a blog, D4Dementia to share some of our experiences of my dad’s years with dementia, and specifically to document some of the good practice that had underpinned much of the care and support that he had received. Creating D4Dementia has led onto all the work I do now, as a Freelance Campaigner, Consultant, Writer and Blogger. I made a film for the G8 Dementia Summit in December 2013 that concisely sums up my personal experiences.
As my portfolio of work has grown, so I have come to realise that good practice in dementia care is rarely spoken about in comparison to poor practice. As a result, I am finding that there is an immense demand to talk about and embed the key qualities of good care and support for people with dementia.
Many people think they provide care that is person-centred, safe and secure, dignified and respectful, kind and compassionate, flexible and responsive. Care that promotes wellbeing, provides continuity, and is delivered by staff who are always knowledgeable and understanding, but realistically no care and support provider will ever achieve this 100% of the time.
Care is, fundamentally, about human beings and it should never be about anything else. As humans we all have failings, but what we can do is strive for improvement, never stop learning, and embrace the knowledge of those who have personal experience of dementia. Working with families is a key part of providing care that encompasses all of the qualities listed above, but it is something that many care providers often struggle with.
Given my personal experiences of my dad’s dementia, and my wider network of contacts who have had their own experiences of caring for and supporting a loved one, I know that relationships between care providers and families can often be difficult for everyone in the relationship to navigate. It’s worth remembering that every diagnosis of dementia is given not just to the person, but to everyone who knows and loves them. Admittedly, some people do not have an actively involved family or indeed any family at all, but for those who do, teamwork with their family is an important part of helping them to live well with dementia.
When I work with care providers around improving engagement with families, I advise them to follow some key principles that include: creating an atmosphere of mutual respect (led by the care provider), embracing the sharing of knowledge, fostering an environment where families are equal partners with the care provider (rather than a model where the care provider dominates), learning from complaints and being open to evolution and adaptation.
There is no perfect way to resolve the human frailties and shortcomings that are an inevitable part of the complex landscape of dementia care provision, but there are many other human traits that can be hugely positive. For example, each of us has the ability – be it natural or learnt – to see the person behind the dementia. Remember, people with dementia are OUR loved ones.
We also have the ability to think about how we interact with people who have dementia. Again, this is something I’m asked about a lot, and communication is a key part of the dementia care training package I am currently developing. Positive interactions with a person who has dementia include aspects such as: not ‘writing off’ the person with dementia, talking to them (as opposed to ignoring them and talking to a family member), involving the person, giving them the time they need, being mindful of specific communication difficulties, listening to the person and observing their body language, explaining what you want to help them with or information you need to give them, avoiding overwhelming the person, providing, respecting and supporting choices and never giving up.
The last point is important, because with increased awareness of dementia has come a concern that providing the care that people with dementia need and deserve is exceptionally difficult. However, I would counter that by saying that those of us who are not living with dementia should always remember that the greatest challenge is for the person who is diagnosed, not us. Our role is to offer them the care and support that enables them to live as well as possible with dementia.