'Your actions will make a great difference to people with dementia'

The following comments were made by carer Tony Whitney at the launch of Trowbridge's Dementia Friendly Community in November 2016.

"My wife Donna and I moved to Trowbridge from Hertfordshire in 2011, when my job re-located here. Although I didn’t know at the time, she was already in the early stages of Posterior Cortical Atrophy, a rare variant of Alzheimer’s disease. She was just 49 when we moved here, though it took a further two years to receive a preliminary diagnosis.

Donna and Tony in 2010Early in 2016, her disease had progressed to the stage where safe and satisfactory home-based care was no longer feasible, and I took the logically simple, but emotionally difficult step of placing her into a care home.

So I have been a carer for maybe seven years or more, from before I even knew that I was a carer. During that time I have witnessed Donna’s failing capabilities and done my best to support her, with much help from family, Alzheimer’s Support, Carewatch and my employer.

So what insights can I share with you from my own experience?

First of all, you should bear in mind that dementia is not a normal part of growing old, nor an old person’s disease. Donna was probably just 47 when she first started showing symptoms, and she was probably hiding symptoms a few years before that. I have read of people as young as 39 being diagnosed with some form of Alzheimer’s disease.

Secondly, no two dementias progress in exactly the same way – each journey is different, depending on which parts of the brain become impaired, and in what order. So what you observe in one person with dementia may not apply equally to another. The well-known comment by Tom Kitwood “When you have met one person with dementia, you have met one person with dementia” is absolutely spot-on.

Thirdly, it can be very difficult to discern when somebody is in the early stages of dementia. Donna was 51 when she received her preliminary diagnosis, and in the four years prior to diagnosis (and even for a year or so afterwards), to the casual observer she would have seemed little different from anyone else.

The most important thing is to involve the person with dementia

There are simple practical things that can help a person with dementia in buildings and at events, such as good lighting, clear pictorial or graphic signage, ramped access, handrails and good acoustics to minimise confusing babble, but for me, the most important thing is how you interact with a person with dementia. I have learned one fundamental principle: you should always involve them!

In the earlier stages of the disease, the person will most likely still be leading an independent life but will struggle with some particular aspects of daily living. You can help by allowing the person time to do whatever it is they are trying to do, and to ask whether you can help in any way. But you shouldn’t take over! Always involve the person. Just keep a light touch - find an unobtrusive way of helping that allows the person with dementia to keep the initiative and which respects their independence.

As the disease progresses, the person with dementia will rarely be without a carer by their side. Again it is important to respect the initiative and independence of the person with dementia by directing conversation through them - not by-passing them by just addressing their carer. If the person with dementia cannot answer a question, the carer can answer for them but it’s always best to involve the person with dementia in the response. This can be a slow process, but is the most satisfactory from the perspective of the person with dementia, and ultimately for the carer who benefits from the emotional well-being of the person they are supporting.

My role as a carer has evolved over the past seven years, building up from ‘light-touch’ to ‘intensive’ as Donna’s dementia progressed, and then changing significantly again when she went into her care home. At the end of April 2016, Donna lost her mobility, which is fairly common in the later stages of posterior cortical atrophy. It took over six months to obtain a suitable specialised wheelchair to cope with her complex postural needs, but shortly after Remembrance Sunday 2016, I was able to take her out to buy a few items from the shops. So once more, I was out with Donna in the local community, and I am again appreciating the efforts people make to respect her as an individual person.

Having Donna back out in the community – going to the park, into the shops, seeing life going on around her, has had a most amazing positive impact on her emotional well-being. In the summer of 2016 she seemed so disengaged, was eating very little and had lost a vast amount of weight (and she was only lightly built in the first place). I did not expect her to survive into 2017. Typically I take her out her wheelchair for an hour or two once a week, but the wheelchair has also enabled her to participate more fully in the social life of the care home. She is now much more settled and cheerful. She has regained her appetite and her will to live.

There is nothing difficult about being dementia friendly. It's about respecting independence and being ready to offer help 

Tony Whitney at the launch of Dementia Friendly TrowbridgeI share this with you as it illustrates so well that involvement in the community brings huge benefit to people with dementia, even in late stages. A community that welcomes people with dementia and makes them feel comfortable gives them a positive feeling of self-worth, with consequent benefit to their mental well-being. This is also hugely beneficial to their carers.

In summary, there’s nothing really difficult about being dementia-friendly. It’s about respecting others’ independence, being ready to offer help when somebody appears to be struggling, acting in a kind, patient and considerate way and respecting the individual as a person. When a society behaves in this way, it’s a benefit to everybody, not just to people with dementia.

I have been greatly impressed by the pledges you have all made today, and I offer my deepest thanks and admiration for committing to be Dementia Friendly.  What you are pledging, and the attitudes behind those pledges, will make a huge difference to people with dementia and to their carers, and ultimately to the entire local community.

Thank you, every one of you.