A kinder way to care

WHEN Lynne Kentish’s mum Hilary died last year at the age of 87 there was grief. But there was also a satisfaction on Lynne’s behalf that her mum’s last few years had been contented, despite the onset of severe dementia.

There was none of the distressing circumstances often associated with the condition: no chaos, frustration or aggression. Her mother slept well, did not go wandering at odd hours or experience upsetting mood changes.

Lynne put Hilary’s contentment down to one thing – SPECAL: an approach to dementia that aims to keep the sufferer anxiety-free and secure in their own interpretation of the world.

SPECAL (which has since been relaunched as the Contented Dementia Trust) was developed by a woman called Penny Garner, who worked with dementia patients for 30 years and whose own mother suffered from the condition.

It dispenses with the common sense response to contradict and correct the memory lapses and confusion that characterise all forms of dementia and acknowledges the new reality of people with the condition.

Garner uses the analogy of a photograph album built up during a person’s life to make sense of both what it must be like to have dementia and how her method works. Each memory is stored as a snapshot of facts and feelings, but as dementia progresses there are “blanks” in the album where facts, or memories, should be stored. Feelings, however, remain unaffected; so, when they can’t remember things, people with dementia turn to old pages of their photo album, seeking out facts stored years ago to make the best match they can to present circumstances.

By tapping into this new reality, rather than by us imposing our own, the person with dementia can be saved from distress and instead find contentment.

The approach worked so well for Hilary that Lynne and her mother’s former carer, Sue Clarke, have now set up a community interest company called Help for Dementia, so others can reap the same benefits from the SPECAL method.

“When I was a family carer, the one thing that I wanted more than anything was to try to understand what mum was experiencing and what I could best do to help her and make her life – and consequently my own – as good as possible under the circumstances,” says Lynne, who lives in Bury St Edmunds. “That seemed to me to be the only – and obvious – place to start. But until I came across SPECAL – and this was after a lot of searching – no-one seemed to really be able to give me that vital piece of information.

“Once I had seen the SPECAL photograph album presentation the penny totally dropped and I was able to change our lives for the better. I also went on to train at the trust as a practitioner and trainer. Now I want to help others in the same situation not to have to go through the frustrating and agonising times that we did (before finding SPECAL).” Lynne’s new not-for-profit community interest company has secured some funding from Suffolk County Council and begins a programme of free training sessions in July.

She has also had interest from Norfolk and Cambridgeshire and is hoping to help spread a revolution in dementia care that could transform the experiences of those with the condition and their carers.

When Hilary was diagnosed with Alzheimer’s she was living in Kent and Lynne was regularly making three-hour trips to try to support her, before eventually deciding to move her mother nearer, to a flat in Bury.

“It was all confrontation at that point,” she says. “I was trying to get her to have baths and she would say she just had one. Everything I wanted to do she would either have just done it or did not want to do it. Every time we went anywhere she would have anxiety about whether she had enough money in her purse and the whereabouts of her keys. It was very difficult.”

The transformation in their lives and relationship was immediate once Lynne discovered SPECAL, through Suffolk Family Carers, and began to implement the three golden rules of the method: don’t ask questions; listen to the expert – the person with dementia; don’t contradict.

The thinking is that asking questions will require the person with dementia to search their “album” for information which may not have been stored and which will cause them unnecessary distress. Contradicting them will have the same effect.

“It is all trial and error. You can’t immediately become an amazing ‘Specaler’ but if you just start to employ the three golden rules they will immediately make a difference. If you do make a mistake, you blame yourself and say: ‘Silly me’.”

What really drives Lynne is the desire to save others from the difficulties she suffered before she stumbled upon SPECAL herself. “I was tremendously frustrated by all the bureaucracy involved in getting help to provide care for mum,” she says. “After all, I knew mum better than anyone, I knew what we both wanted and needed to help us, and I didn’t want a ‘one size fits all’ system imposed upon us.

“After much investigation, I found out that we could actually receive money from the council through something called direct payments (now personal allowance) and then find the carers that suited us and hire them direct, rather than having many and various agency staff coming in and out, most of whom had had little or no training in dementia.

“The confusing amount of people, the lack of knowledge of the condition and the strictures of ‘care by rote’, rather than person-centred care, are an absolute disaster for people with dementia and generally serve to make the person more confused and agitated.”

It was in this way that Lynne found Sue Clarke, who has 25 years’ experience in care homes and as a freelance carer and now specialises in caring for people with dementia.

“Sue used the SPECAL approach too and was able to care for mum as a ‘friend’ – which was much more acceptable than saying you’re a carer – until she died,” says Lynne. “Via this ‘softly softly’ approach and a consistency of who was coming in, mum was much more relaxed and willing to co-operate in her own personal care.

“After mum died, I decided that as far as was in my power, I didn’t want anyone else going through the nightmares that we had, firstly with understanding what to do and how to cope, and then in bringing in appropriate care.

“I approached Suffolk County Council about SPECAL methods and started Help For Dementia with Sue to provide guidance, advice and practical help for carers of people with dementia.

“We have been given a small grant to, via SPECAL methods, run training courses to help people understand the condition and how to immediately improve lives and give advice on personal care, how to obtain practical help and to offer a sympathetic and listening ear.

“We’ll be offering these courses to carers over the course of the next nine months, and they are free to attend, thanks to the grant. The carer can come alone or with their loved ones and the courses will be in and around Bury.”

Lynne and Sue will also be doing some rural touring round Suffolk with their “dementia roadshow”, which features the SPECAL photograph album and lots of advice.

“There is an enormous buzz in Suffolk, which is spreading into Norfolk now too, about the Contented Dementia Trust,” says Lynne, who is also working with LimeSkills in Ipswich to train personal assistants, care home managers and carers.

“Feedback from these sessions has been fantastic.

“We need to get this method across to more people. Apparently only 30% of GPs have had any sort of dementia training and bodies such as the police, shops, banks and others who come into contact with the public would also find the insight illuminating. Private care homes would also benefit.

“We also want to take this into hospitals and memory clinics, which are a real bug-bear of mine. I want to campaign against the way they test people for dementia, as they set the person up to fail and make them feel stupid. There is a much kinder way of doing their tests and getting the results they need. Just ask me!”

Lynne is particularly keen to highlight the issues involved this week, which is Carers’ Week, an annual awareness event to recognise the contribution made by the UK’s six million unpaid carers.

As part of the week, LimeSkills has a carers’ pop-in information point in Tower Ramparts Shopping Centre, Ipswich, until tomorrow.

n Help for Dementia’s first free training sessions will be from 1-4pm on July 16, 23 and 30 and August 6 at the St John’s Centre, St John’s Street in Bury St Edmunds. The sessions are aimed at carers and cover all apsects of caring for someone with the condition, from understanding the subjective experience to how to make life easier for everyone, and practical sessions about personal care. For more information, call 0778 609 1775 or 01284 765105.

For more information about the courses run with LimeSkills visit www.limeskills.co.uk/ and go to ‘courses’.