How can we maintain dignity in Dementia?

I’ve been thinking about the Dementia bookcase analogy I shared recently on our Facebook and Twitter.

I imagine the bookcase itself to be the frame or foundation of the individual, the framework that the memories and experiences are stored in throughout a person’s life; the bottom shelf being filled first, then the next until all the shelves are filled, making up a lifetime of memories and experience. In Dementia the ability to make and access those memories is gradually lost, starting with being able to make new memories and generally working backwards, so the earliest memories and learning experiences seem to be the ones that linger longest. The way I imagine it, the lived experience of a person in later stage dementia consists of those earliest memories and learning experiences they can access, and the bookcase itself which represents the foundation of their being and personhood. When I think about this concept I am reminded that much is talked about retaining the dignity of the individual with Dementia but I am starting to think this may be a little misunderstood as in the later stages only childhood memories may remain. I did a quick Google search and found this definition of dignity in children.

‘Behaving with dignity and respect towards children and young people involves respecting their views, their choices and decisions, not making assumptions about how they want to be treated and working with care and compassion. Those who receive care and support are able to make choices about the care they receive.’

I think this very good definition can also encompass those living with later stage Dementia or, to be frank, every individual. This is how we would all like to be treated, and, even if well-meaning, other people’s opinions don’t come into play here. I believe that dignity is a right for those in the later stages of Dementia, but the definition of what that looks like for an individual can only really be decided by themselves. I have the suspicion that sometimes what is referred to as ‘maintaining a person’s dignity’ can be an attempt to hold onto the person they used to be and the relationship you used to have with them. While this is completely understandable, I think this can rob you both of the joy of ‘now’. Understanding who they are now will help to find a way for both to connect and enjoy moments together. I decided to journey with my Dad, into his reality and while towards the end he didn’t know who I was, I knew who he was, at his core, or put another way, I knew what his bookcase was made of.