Positive dementia action plan: Part 1

Seeing the person and embracing your new reality 

Having a parent with dementia is one of the greatest challenges you can ever face. It will test every resource you have, bring mental and physical obstacles that at times feel insurmountable, and put you onto an emotional rollercoaster unlike any other.

On the positive side, it will also teach you invaluable lessons about life, how very simple, basic things are so important, and that love can be an amazing force for good even in the toughest times.

My father had vascular dementia for approximately 19 years. He went ten years without a diagnosis, struggling on at home while the health and social care systems abandoned him and us, and then spent the last nine years of his life in three different care homes, punctuated by spells in hospital.

Dad’s dementia began when I was about 12-years-old, and unbeknown to me then, it was to dominate my teens and twenties before dad passed away in April 2012.

I am now a dementia campaigner, using all the knowledge and experience I gained during dad’s dementia, and from the many other people I have met living with this disease and their carers, to benefit people who are either going through their own journey with dementia at the moment, or will do in the future.

Every dementia journey is different

One of the key points for me in everything related to dementia is to stress just how individual and personal each person’s journey with dementia is.

Although there are over 100 different types of dementia, even in the most common forms, every single person I have ever met has exhibited their dementia in a different way.

No matter how advanced the disease becomes, each person’s individuality remains intact; you may have to look harder to find it, but that is where compassionate, person-centred care comes into its own.

Seeing beyond the dementia to the person is something that can be very challenging, but once mastered, gives you a priceless connection that will never be broken.

During my father’s dementia, people often asked me if he still knew who I was. Given that his conversational ability declined as his dementia progressed, any chance of him saying my name faded year by year, but his body language and reaction when I entered the room, or said something to him that sparked a memory, made it very clear to me that he still knew who I was.

How to deal with dementia

The temptation when someone has dementia is to bombard them with questions. Who am I? Who are you? What did you do today? How do you feel? It is a natural response that we all have, and I was certainly guilty of it on occasions when visiting my father, but it can lead to more confusion or distress for the person with dementia, and equally, can leave you disappointed or upset by the lack of a response, or a response that you did not expect. Instead simply getting on with doing things that your loved one enjoys, whether that be putting on music, offering them a favourite food or drink, or just generally chatting about things they would be interested in, is less challenging for them and less stressful for both of you.

Learning to live with the changes in someone as dementia progresses and adapting your behaviour as a result, is a huge test of character, but it can provide some unexpected delights.

One of the things I miss most is sitting with my dad, enjoying a cup of tea (me feeding him his in-between sipping mine) and listening to favourite music or, on a summer’s day, sitting in the garden listening to the birds. Ordinarily we would both have been chatting constantly (dad loved telling his stories), but there was a timeless beauty in the silence.

Other simple pleasures can come from giving your loved one a hand massage with favourite scented oils or creams,  painting the nails of a female relative, giving a male relative a shave, or even just stroking their hair or holding their hand to bring comfort and happiness.

If they like to walk, walk with them; I knew one lady whose father liked both walking and eating chocolate, so she would walk with him, feeding him chocolate, and his happiness would be obvious for all to see.

Looking through old photos or books and talking to your loved one about their earlier life, or things they enjoy like sports or hobbies, can also be very helpful. My father loved football, amongst other sports, and I would often tell him about our team’s performances, or particular mishaps that our arch rivals had endured, bringing a knowing smile to his face as a result.

During these interactions, or just generally, your relative may say the same things repeatedly which can become very annoying for you, but when they cannot remember what they’ve said this can be a safely mechanism for them. For your loved one, saying something over and over also gives rhythm to their conversation, which they may find quite comforting. Working with what they are doing, knowing that it is most likely only going to be a phase of their dementia, is infinitely better than trying to battle against it.

Dementia is designed to make those watching a loved one with it angry and upset. More than anything you just want to take the dementia away and have your parent, relative or friend back to the person they were. Learning the art of embracing the new reality you find yourself in is the essence to both coping with it yourself and making a positive contribution to your loved one’s life, and in a journey you travel together, the path of which is unknown, the connection you have and will always have is what will see you through.

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