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Dementia: Caring for the carers

Thoughtful Talk confidentially to Samaritans any time of the day or night.

Whatever you're going through, whether it's big or small, don't bottle it up. We are here for you if you're worried about something, feel upset or confused, or just want to talk to someone.

The facts about dementia

According to NHS statistics, one in 20 people over the age of 65 will develop a form of dementia in later life, a figure which rises to one in six for those over 85.

The condition is defined by the UK health care organisation as the (usually gradual) loss of specific mental abilities. These can include the impairment of the capacity to think, to reason and to remember. Those caring for sufferers may also notice distressing changes in their loved one's behaviour, mood and personality.

There are over 100 varieties of the condition, the most common of which is Alzheimer's disease, which the NHS states affects approximately 400,000 people in the UK. Other varieties include vascular dementia, dementia with Lewy bodies, fronto-temporal dementia, Korsakoff's syndrome, Creutzfeldt-Jakob disease and Aids-related cognitive impairments, according to alzheimers.org.

Additionally, the Alzheimer's Society states the number of people with dementia in the UK is set to rise to an estimated 1.7 million by 2050.

One couple's story

Recently, the case of one victim has made headlines across the UK. Bonnie Suchet, 67, is the wife of retired news presenter and dementia charity activist John Suchet. He recently gave an interview to the Telegraph in a bid to raise awareness of the emotional impact of the condition on both sufferers and their carers.

Mr Suchet told the Telegraph: "I cannot talk about it with her because she does not know. We cannot sit down and say: 'Damn this bloody disease' and decide how we will get through. I find that one of the most difficult things of all."

The couple have been married for 24 years, according to the newspaper, and were looking forward to spending their old age together. However, as Mr Suchet observes: "In planning for old age, I had forgotten the most important aspect: health."

Mr Suchet's wife's condition, the first signs of which began to emerge five years ago, has slowly deteriorated, to the point where she now recognises her husband only as John, her primary carer and the one she turns to for support and guidance in her confused state.

The emotional impact

According to Mr Suchet, the onset of his wife's condition has consumed his life as well as her own, causing him profound emotional distress, to the point where he admits having contemplated suicide.

He is quoted by the Telegraph as saying: "There are times when I want to bury my head in my hands, when I persuade myself she would be better off without me because I am crap at handling this. You have suicidal moments."

In an interview with For Dementia, one of the charities Mr Suchet is supported by, he speaks of the changed roles the onset of dementia has meant in his marriage: "I have gone from lover to primary carer and dread the future that is going to be."

"Worst of all is the sense of loss. I have lost the Bonnie I knew and loved. She has gone. Yet she is physically still there. We do not talk as we used to, we do not behave as we used to, we do not laugh as we used to."

However, despite the often unbearable nature of the condition, he tells the organisation there are still "little shafts of light" in the couple's days that help ease the emotional strain, giving the example of a rare moment in which his wife made a joke, referring to herself as "Bonnie@confused.com."

Support for dementia carers

Carers feeling overwhelmed while looking after someone suffering from dementia often ignore their own needs and fail to seek emotional support for themselves, according to alzheimers.org, which states: "It is much easier to cope if you look after your own health and well-being, and there is lots of support available."

The organisation recommends that carers look after their own mental well-being by ensuring they are able to set a little time aside for themselves each day in which they can relax. This may involve asking friends or family round to take responsibility for their loved one for a short time.

It also suggests carers make sure they get out of the house at least once a week to pursue hobby or activity important to them, or to socialise with others. A well-balanced diet and regular exercise will also help recharge batteries and increase energy levels, the website states.

Also of primary importance is that carers find out what support is available to them in their local area, in terms of support groups, charities and their local authority.

Carers facing financial pressures should also check through their local authority if they are receiving all the welfare benefits they are entitled to.

According to alzheimers.org: "Every carer needs support and people with whom they can discuss their feelings."

If you are affected by issues surrounding Alzheimer's or dementia and would like guidance or advice, both Alzheimers.org and Dementia Care offer assistance.

The Alzheimer's Society can be contacted between 08:30 and 18:30 GMT on 0845 300 0336, while Dementia Care provides a carer support group, and a training and consultancy service. It is also hoping to set up a dedicated helpline in the future.

Samaritans trained volunteers are there to offer confidential, non-judgemental emotional support to anyone experiencing distress, you can contact them via phone on by phone on 08457 909090 (GB), or 1850 609090 (ROI), email at jo@samaritans.org or face to face, visit http://www.samaritans.org/ to find your nearest branch.