Families at the Heart of Caring

This week, Dementia Carer Voices would like to welcome Rachel Johnstone, who has written about Dementia and the family. In her guest piece, she sets out her views on the role that younger family carers can play in supporting a loved one with dementia.

There is a favourite, and very poignant, saying of mine: “a person is a person through others”.  What makes us ‘human’, what gives us our sense of ‘self’, is our relationship with others. We are not just individual beings, separated from one other; individuals need other people to be fulfilled.  For example, you could be the most successful and respected person in the world, but if you suddenly found yourself alone on the planet, then ‘who you are’ would amount to nothing.

Unfortunately, I can’t take the credit for coming up with this philosophy and saying.  It has its roots in South Africa and Zulu tribes – and I’m sure it’s no coincidence that the sense of family, and a community spirit, is at the heart of every individual’s existence in these societies.

Dementia certainly doesn’t change the need to be a person through others.  Indeed, it is a central to the concept of ‘personhood’ and the family – with intertwined life histories and many shared memories – are in a privileged position to be able to care for their loved one in a truly person-centred way.

There is no better place to realise your sense of self than through the family.  In fact, I would say that there is no better relationship than that between a grandparent and grandchild to provide a reciprocal sense of belonging, security and well-being.  It has been said that the love between a grandparent and grandchild is “the most simple form of love that exists.”  Children learn a lot through close, intergenerational relationships and grandparents offer unconditional love, support, encouragement and wisdom.  What is more, stories and memories are often the lifeblood between the generations and many grandparent / grandchild relationships are built around telling stories and sharing memories.

I believe that children have a particularly valuable role to play in caring.  This is one of the many reasons why I find it so sad to hear families say that they believe they should try and ‘protect’ younger members from their loved one’s dementia through fear of it upsetting them.

However, there are many reasons why there is so much to be gained from talking openly and honestly to children and younger members of the family about dementia – and involving them in the care of their loved one.  Children are surprisingly resilient and have a natural tendency to take things at face value.  This means that they are more likely to ‘live for the moment’ and not be as preoccupied by the future and how dementia affects their loved one in the long-term.  This ‘live for the moment’ attitude – stepping into their loved one’s world and accepting their reality – can be a particularly beneficial approach to caring for someone with dementia.

Secondly, grandparents and grandchildren tend to be great ‘playmates’.  Intergenerational activities are beneficial and meaningful to a loved one with dementia, create moments of ‘togetherness’ and build new memories.  This might be sitting down to watch old movies together (which tend to have a simpler and easier-to-follow plot line), visiting a classic car show (and taking a trip down memory lane), playing with an old spinning top (a great way to reminisce about old toys and can be a wonderful way to easy agitation), playing an adapted version of table tennis (which activates multiple areas of the brain simultaneously), listening to music (because the area of the brain associated with musical patterns seems to remain responsive even after speech starts to fail) or ‘circle dancing’ (which relies on muscle memory – an unconscious process which the body just knows how to do).

You will also be amazed by the creative ideas children come up with to make life more manageable for your loved one.  For example, the 15 year-old son of a friend of mine came up with a brilliant solution of writing out the main things happening during grandpa’s day on a piece of card (inside a plastic wallet) and attaching this to one of those retractable key-rings (so he can always keep it close by in his pocket).  On the other side is printed his name and address.  Now, if the family didn’t have such an open relationship regarding their grandpa’s dementia, then this simple but brilliant solution to the problem of grandpa always forgetting what he was doing each day would never have been found.

Thirdly, whereas dementia may chip away at a person’s memories – particularly affecting the short-term memory – younger members of the family (and, indeed, all generations) can ‘hold on to memories’ for the family and retell these important stories in order to reconnect their loved one with their past.  In short, we can remember for and with each other.

Finally, I’ve already referred to that special grandparent / grandchild bond – but there is another point to make related to this.  Dementia affects factual and emotional memory in different ways – and although your loved one may forget the details of their recent activities, the positive emotional memories, and feelings of contentment, will remain with them.  Spending quality time with grandchildren is a sure-fire way to provide an emotional boost for your loved one, thereby reducing agitation and discontentment.

Of course, involving children and young people in caring isn’t ‘easy’ and it’s no quick fix.  It is interesting to note that the National Dementia Strategy makes no reference to contact with grandchildren, specifically, although family carers are recognised as “the most important resource available for people with dementia.”  However, I whole-heartedly believe that we have to involve our children and young people if we are to create truly dementia-friendly communities.  For me, there is nothing more uplifting than watching your loved one’s eyes light up – seeing that spark of recognition – as a result of something you have done.  Caring can bring the whole family closer and it can deepen family connections.  It’s all about family solidarity – sticking together, supporting one another and sharing special moments: a truly ‘whole family’ approach to caring.

I wanted to end with another of my favourite quotes from Maya Angelou: “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”  This to me is what extraordinary care is all about – and younger members of the family have just as an important part to play in ensuring that your loved one never forgets how you made them feel.

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