Dementia care: Your stories

People with dementia often need extra care

A report by a leading health charity says some carers for people with dementia are not getting the help they need.

The Alzheimer's Society has warned the lack of support in England, Wales and Northern Ireland can result in people going into residential care too early.

Its chief executive Jeremy Hughes said some of the home support given to people diagnosed with dementia and their carers was an "absolute travesty".

BBC News website readers have been getting in touch with their experiences.

Wing-Man Chan, Brent

I am caring for my mother alone and I don't have any support at all.

My mother was diagnosed with Parkinson's disease in 2004 and then about a year ago, she had a fall and she began to have hallucinations. She was then diagnosed with dementia.

I referred her to social services but the direct payment to fund care for her was not enough. I got a private carer but I had to let her go as I felt my mother was not being cared for properly.

It feels like you are suddenly put through the mills, with no training or support on how to care for someone who has these conditions.

My mother's hallucinations returned recently and I have had to go through the whole process again to try to get funding for a carer for her.

Private carers are just too expensive and I don't understand why - if social services already have our records - we have to start from scratch to get help.

I find that social services and GPs are not co-operating with each other. The cost is just too much for me to handle on my one salary.

John Arnold, Totnes

My wife June has dementia - she was diagnosed around two years ago.

I'm 75-years-old and I am her main carer. We have a nurse who comes to wash her hair and do other bits but that is only temporary.

We had a visit from a doctor and a nurse when she was first diagnosed but we have gone through several since then.

We would just like some consistency. We have no problems with the individuals - they have had to move on for whatever reason - but the system is a problem.

We keep having to see different doctors about my wife's care - but how can we build up a rapport when there is no continuity.

We only seem to have one, or at most, two nurses covering all of South Devon. Mental health nurses arrive and are transferred elsewhere again within weeks.

If things continue as they are then in future it looks like the only help we'll get will come from charities or paid for care.

But I don't know what the future is going to hold when GPs take on the finances.

Kirsty Jones, Merthyr Tydfil

My grandfather Cyril, 67, was diagnosed with dementia a few years ago and his symptoms are getting increasingly worse.

He needs help getting dressed and sometimes the disease makes him nasty and aggressive.

He doesn't really have any physical problems but mentally that's another story.

He lives with his wife Jean, 66, who is his main support, he only gets to see his doctor once every six months.

Every time he sees somebody to get assessed, they can only see him for a short period.

Fifteen minutes is just not enough for my grandmother to stress how bad the situation has got. She then has to cope relying on just his medication until the next appointment.

When he sees his consultant at the hospital, he is asked how he is but he can't give the right answer.

We, as a family, do not feel himself or his wife have any support from social services or the hospital.

We feel let down by the lack of help and information offered.

Rosie, Norfolk

I used to work for the Alzheimer's Society and, as well as being an outreach worker, I was a dementia care trainer.

I would go out into people's homes and assess them and help give them information about accessing benefits among other things.

I would also give emotional support to those with dementia and their carers.

I think one of the main problems is that there appear to be very few care agencies who have highly trained or specialist staff in dementia care.

Someone working with a person who has dementia needs to be "on-the-ball" and know how dementia manifests itself.

Empathy and practical care skills are great but more knowledge is needed to ensure the person cared for does not become distressed.

Often the behaviour of those with dementia is considered by people to be "unacceptable" or "difficult" and carers find it difficult to cope. But the carers were not reading the people in the right way - which caused everyone distress.

There is a huge gap in care provision in this sector, but there is also a shortage of money, but allowing carers and the person they care for to reach breaking point then shoving one or both into hospital is a false economy.

There also needs to be a general change in attitude about dementia.

Additional comments

I am a carer and have worked for many years in dementia care. I watched my grandmother die from the disease and it is heart breaking when they don't even recognise their own family. I have always worked with compassion, caring and love for people I have cared for. Yes the job is demeaning and with very little pay, but at the end of the day I did it because I care about people. Unfortunately there are some carers who don't have the patience to do the job properly and if that is the case don't do the job! Tammy Moody, Redditch

My father suffered from Alzheimer's disease. My mother cared for him devotedly, at the expense of her own health. The external care and support she received was negligible. Had she had some sensible support, their last years together could have been very different. The system fails so many people. Dilys Gale, Hampshire

My mother has dementia. My elderly father is her main carer. He has his own health problems and mum has carers come in four times a day to help. It feels like dad or myself has to fight so hard to get help of any kind. It seems like it is only when I intervene and make myself a nuisance that things are done. It is almost as if the GPs and Social Services just don't care. Jill Rushbrook, London

Support for dementia sufferers and their carers does need to be improved. However, one aspect which is rarely touched upon is the care provided within hospitals for people with dementia. Patients are admitted to wards where no there is no specialist care. Dementia sufferers who require 24-hour-one-to-one care are left to fend for themselves in a ward where there are no security measures to prevent them "wandering". Julie, Tyne and Wear

This report whilst being very welcome is far too optimistic. This area of society (i.e. people suffering from dementia) is totally forgotten by politicians, and therefore large swathes of the public. The lack of support, resources and general misunderstanding is a crime of enormous proportions. All too often the suffering that people contend with is understated or glossed over and our current level of pathetic support is often adding to this suffering. Richard Speakman, Uttoxeter