Dementia: A carer’s perspective

 

By Barry Jackman, Dementia Awareness Partnership Co-ordinator/Project Manager

Six years ago, I was angry and felt let down by a system designed to help people. It was my introduction to a care system that demonstrated just how uncaring it could be to people in a vulnerable situation.

I am an Islander by birth and proud of my heritage.

I am also reasonably educated, fairly articulate. I had coped little by little with the increasing demands of my wife, Ruth, who had been diagnosed with Alzheimer’s Disease a few years earlier.

Like many carers, I kept adjusting to the changing way the disease presented; making allowances for what seemed “irrational” behaviour like hoarding tissues in every conceivable place and asking the same question over and over again; a constant need to be taken out for a drive and a growing pattern of disrupted nights and her steadfast refusal to admit there was anything wrong. There was no respite. She would not settle with strange people so without realising it, I was steadily approaching a breakdown. When the inevitable crisis occurred, I faced the bureaucracy of an overworked system gearing down for a public holiday. It was late December and the rest of the world was looking forward to a holiday. I felt I was being a nuisance. At this point my family rescued me but I had to relinquish the care of my wife for almost fifty years to strangers.

This marked a new direction for me.

Firstly, I had to overcome my anger at being a victim of a failing system that I realised was seriously flawed.

I was shocked by the inadequacy of post diagnostic care, at the randomness of residential placement but most of all by the extent of my ignorance of dementia care.

My priority, though, was to ensure the wellbeing of my wife but as it happened, she found herself in a residential home that looked after her and made sure it kept an eye on me as well but this was only by luck. I had no idea what represented good care. I was reliant on the ebb and flow of the social care tide.

Where was good quality care to be found?

What was good care?

Why were there so many confusing and puzzling explanations surrounding dementia?

Why were some carers unable to deliver what they promised?

How was it that so many carers were compassionate but unable to deliver effective care?

I felt cast adrift amongst the flotsam and jetsam of good intentions.

Good intentions sometimes founded on instinct, misguided conceptions and ignorance only made the situation worse.

I quickly realised that professional carers relied on their instinct and there did not seem to be a standardised approach to understanding the disease or the care required of people at various stages.

One size fitted all.

From a carers perspective, survival depended on how you as an individual adapted. 

I wanted answers to these questions:

• What was going on?
• What could I do to make life more bearable?
• Who was prepared to give me a rational explanation of what I faced?
• How could I judge what was good care and what wasn’t?

And then I met Dr. Gemma Jones at one of her two-day courses and slowly these questions began to be answered.

I began to acquire knowledge of the disease: how it progressed and why behaviour is linked to stages in that journey.

I saw the importance that visual perception plays in cognitive acuity.

I began to see for myself how good care could be achieved.

But I also observed how potentially good carers could become excellent carers.

I also noticed how outdated concepts were still evident in “professionals”.

Only recently I was asked by a care professional whether my wife had reached the ‘baby stage’ yet.

And, YES, I was angry but I knew that no offence was intended and with better training this person would be far better equipped to do her job.

My role in this initiative is as a link between those who provide care and those who need it.

I have a vested interest.

I see dementia daily.

I know what care works and the pitfalls of misguided care.

I want to see us establish a benchmark for good care.

I want families to know the difference between good, mediocre and poor care.

When a business is advertised as ‘dementia friendly’ I want families to know what this means.

I want the care community to be held to account for the promises they make.

I want to inspire carers to provide excellent care so they are proud of their work and proud to be a valued member of a caring society.

There is evidence of good practice and willingness to improve but it is disjointed. Good leadership is lacking. The strength of any initiative is the preparedness of a system to adopt change and this lies with those people who manage. Without their firm commitment change cannot take place. A workforce continues to feel undervalued, disenchanted and inclined towards misjudgement when clear leadership and good practice is missing.

There is no point in encouraging a workforce to recognise the value of an initiative if the very training being offered does not include the whole workforce spectrum; from the most senior person to the most junior.

Training must be seen as fundamental to an ethos and not a necessity to be endured as part of a work programme.

I see good training as a springboard to excellence because it allows us to access the best of contemporary knowledge and practice. It gives us a common language with which to communicate and an assurance that we are all heading in the same direction.

In the last three years I have been fortunate to meet so many inspired and inspiring people.

I know that people respond positively to role models and now, with your help, we want to provide dementia role models throughout the Island’s care community.

And this initiative has the potential to do just that.

We chose the word “PARTNERSHIP” because we want to embrace the wider community.

We want the community and statutory bodies to form a genuine dementia care alliance……

…… that has an ability to be self-sustaining

…… is based on scientific principles

…… has tried, tested and evaluated techniques for carers to use

…… is open to scrutiny

…… has the ability to adapt and evolve

…… is available to professional carers, community volunteers and any interested individual.

This initiative makes good practical and economic sense.

By working together we can ensure that as partners in care we can all acquire a foundation of knowledge on which to base an “Outstanding” system of community dementia care across the Island.

Good care is the responsibility of society as a whole and we must face any challenge that confronts us with a determination not only to succeed but to do so in a way that allows us to provide the person centred care we all hope to receive when we most need it.