HAVING to cope with a loved one who suffers from dementia is an harrowing enough experience for their carers — but having the added financial burden of paying for care in costly residential or nursing homes and even risk losing one's home to do so, can be a double blow.

A Tavistock woman, who knows only too well of the many hurdles to overcome these problem, is June Wildman, who hopes that by highlighting her own case, it will encourage others to take the first steps towards securing their proper entitlement through NHS funding.

June, who is in her seventies and is married to Alan who has dementia, told the Times: 'Dementia is just the worse thing to have to cope with from a carer's point of view; the sufferers themselves are not aware of anything and the carer has to deal with all the problems.

'The path of dementia for both sufferers and carers is very, very hard for people outside the situation to understand.

'There are difficulties enough just in getting a diagnosis of the condition, which on average can take three years to be formally done. Even then doctors back off doing so, because there is no cure for the disease.'

'When that diagnosis was finally made for Alan my stomach just turned upside down.

'How was I going to cope? What journey do I have to go on, where do I get help?'

Symptoms that carers have to cope with include acts of aggression by the sufferer, confrontation, and some even go 'wandering' at all times of the day and night.

For 24 hours a day, some without respite, carers have to put up with unpredictable behaviour, which can be physically and mentally exhausting, as well as try to deal with the demands of a 'normal' life.

Despite all this happening to her on a personal level, June turned a negative into a positive by co-founding The Memory Café in Tavistock which provides vital social contact for those living with any form of dementia or memory impairment, and also for their carers.

The Memory Café itself has 35 members — including sufferers and carers — in Tavistock. There are 48 such organisations, including Okehampton which has 20 members, and Hatherleigh, in Devon.

'Places such as the Memory Café are so important,' said June, 'because carers feel safe to share their problems and so we give them practical support and information.

'When they come they are usually at their wits end with the burden of trying to cope 24 hours a day with someone who doesn't even necessarily recognise them. It's soul destroying.

'The person you love is dying before your eyes even though they are still alive — it feels in itself like a sense of grief, that in many ways you have lost the person you have known and loved. I can only describe it as like a bereavement process.'

Her husband Alan, 86, was diagnosed with dementia in 2002; when his condition worsened and he needed full-time professional care in 2008 he became a resident in Spring House, Mary Tavy.

In his working life Alan was a stockbroker's clerk in London. After retirement, he and June came to Tavistock, 20 years ago. For many years Alan was a steward and treasurer at St Eustachius Church in the town and June herself has been a very active member of the West Devon community.

June, who is hard of hearing, is the chairman of Tavistock's Hear Me Now project, which helps those with hearing difficulties and chairman of Tavistock Camera Club in addition to her involvement with Tavistock Memory Café. Since her experience of living with someone with dementia she has also become a committee member of the Devon Dementia Partnership Group and also the Devon County Council and NHS combined 'Devon Disability Network Group.'

For carers, many of whom suffer added health problems themselves through the stress of the responsibilities, one major worry is how to pay for the care for the sufferer.

Presently, men and women with dementia have to pay the full cost of their care until they have only £23,250 in assets (including property although this cannot be sold if the partner still lives there).

With potential costs of around £600 to £700 per week to find, it quickly depletes the savings of suffering or loved ones.

There are currently three ways of funding care — paying privately, through the local authority following a means test or, for the more severe cases, through NHS funding, which is not means tested.

Asha Beswetherick, who specialises in issues on continuing care and has advised June in her successful help for funding, said: 'The social and healthcare system surrounding funding of the elderly in care homes are two very different protocols and are often mistaken as being one and the same.

'If a person's primary need for care is a "health need", then under the Department of Health's National Framework for NHS Continuing Healthcare, dated July 2009, they could be entitled to receive funding paid for by the Primary Care Trust of the NHS (PCT) regardless of financial means. This is called NHS Continuing Care.

'Eligibility is assessed against a National Decision Support Tool to ensure uniformity of approach and to look at all aspects of mental and physical health care needs in assessment.

'A decision is then taken regarding eligibility.

'If you are eligible then your care is provided free of charge, as long as you continue to meet the criteria. Eligibility is based on an individual's assessed health needs and can be provided by the PCT in any setting, including your own home, care homes or hospices.

'In June's case, the initial hurdle that Foot Anstey helped her overcome was the mis-conception that her husband, Alan, was not entitled to an assessment nor could he qualify for continuing care because he was in a residential setting rather than a nursing home.

'Unfortunately, this is the message that a number of my clients seem to receive regarding their elderly loved ones.'

With Government policy aimed at directing the NHS to encourage its 'clients' to remain in the community, rather than in hospitals or specialised care centres, there is more pressure on the carer.

Asha added: 'Power of Attorney may be able to help a person with dementia. If they haven't got POA their carer or spouse may even lose control of their loved one's affairs.

'At that point the "client" should be allocated a social worker, regardless of their financial circumstances, who should then be able to help advise on possible funding.'

June was complimentary about how using the services of a solicitor has helped to secure continuing care status for Alan.

'It can be a nightmare going through all the bureaucracy, none of the carers at Tavistock Memory Café knows exactly whats going on with all the changes in the NHS, it's all very confusing.

'One of the problems of trying to apply for continuing care is that firstly you have to request them and when you do eventually get one it is very difficult to fill in where dementia is concerned, as it doesn't quite fit the right boxes they are looking for.

'It's very woolly. Having the professional help of someone like Asha is invaluable and can save a lot of time, worry and expense.'

For sufferers of dementia or their carers who would like help contact Tavistock Memory Cafe at TASS Anchorage Centre, Chapel Street, Tavistock on 01822 616958.

If you would like specialist advice on making an application for Continuing Care for someone with dementia call Asha Beswetherick at Foot and Anstey solicitors, Plymouth on 01752 675000 or email [email protected]">[email protected]