Dementia care: your voices

Hospitals are overlooking some of the most basic needs of patients with dementia according to the first national audit of care in England and Wales.

The Royal College of Psychiatrists' review of 210 hospitals - the first of its kind - says while services are safe, they are lacking in other areas.

Two-thirds of the staff surveyed said they have not had enough training to care for people with dementia.

BBC News website readers have been getting in touch with their views, with many saying they are not surprised by the findings.

Stuart Hurst, Heysham, Lancashire

Image caption Ernest Barradell's dementia changed his life

My father-in-law Ernest Barradell lives with us and has vascula dementia.

For two years, he was treated with antibiotics as he kept getting infections, but was unable to properly communicate his issues.

When I was looking after him one day, I realised that something was wrong, called the doctor and he was admitted to hospital.

They initially thought he had a strangulated hernia but they then discovered he had a septic cyst which had to be removed.

But in essence, the ward staff both on the surgical ward and the geriatric rehab ward were not capable of looking after him at all.

Due to his inability to form coherent sentences, he was often left misunderstood and frustrated.

In the rehab ward, they would often leave him in a chair for the day, knowing that he couldn't get out of it due to his lack of strength.

This left him angry and he would lash out at people verbally and sometimes physically.

In a nutshell, without our persistence at insisting he was brought back home (which in itself was a major battle), the "treatment" he received would have killed him.

The staff were ill-equipped to deal with him as they had no training to deal with patients with dementia.

Due to the cuts, and the way hospitals are run with a skeleton staff, there was no time given to any patients with dementia, despite the fact that they need reassurance and time spent with each of them.

Very often, he would be looking around wondering where he was (in hospital) and be crying as he didn't want to be left there.

When he went in, he was able to walk about with the assistance of a walking aid.

But the three months he was immobile in hospital has robbed him of the ability to walk now and, as a result, his quality of life is diminished.

Clare, Wales

I am a neurosurgical nurse with experience in mental health caring.

For the past three years I have been a carer for Alzheimer's disease sufferers. I have personal experience as my mother has the condition too.

While I agree with what the report says, nothing can be achieved until funds are released for specific training.

We are chronically understaffed, underpaid, poorly motivated and badly managed - we absolutely lack the specific skills, training and time to deal with this sadly neglected patient group.

We want to provide the best care possible to everyone but simply cannot - there is a chronic lack of time and staff.

After three years in nursing I already feel burnt out.

In an ideal world every hospital would have a dedicated dementia link nurse.

The people with this condition are often disorientated and frightened but such a nurse would help provide them with dedicated care and some stability.

We are sitting on a Alzheimer's disease timebomb which is only going to get worse unless someone intervenes and agrees to take action now.

My mother has dementia and we are trying to do what we can for her.

She is registered with a psychiatrist and at one point, she even volunteered herself for trials and tests so more research could be done on the condition.

Malcolm Weston, Fareham, Hampshire

Image caption Malcolm Weston thinks there is too much expectation placed on carers

My 87-year-old father Victor is currently in hospital and trying to negotiate between social services within the hospital and social services in the community is proving a nightmare.

They don't understand and they don't seem to care, but they expect relatives and carers to be able to cope.

The worse problem I find is listening. Nobody wants to listen. All they are doing is protecting their own policies and procedures.

My father was originally diagnosed with prostate cancer five years ago and then, gradually, he developed dementia.

There is a problem with the word diagnosis when it comes to dementia because it infers that people are paying attention to the condition of these people - that is not the case in my experience.

He has been in hospital for a few weeks and they are trying to discharge him. However he is asked questions like "do you own your home; can you make a cup of tea" etc.

He doesn't know what he is saying. He doesn't own his own home, yet when they asked him to try to gauge his finances, he said "yes".

Caring with someone who has dementia can drive you to despair. They think by sending him back, he will be with those who are suitably qualified. How do you train for this? You can't.

The NHS is driven by cost - it costs them too much to keep him in hospital where he would get the specialist care that he needs. But we as carers get much less money - £57 a week - to try to deal with this.

We're at the stage where we have to go to work, despite the fact he can't be left alone - because if we don't, we'll lose our house.

Kathy Wardley, London

My mum - Daisy Arter, 91, passed away in September.

She was diagnosed with dementia about four years ago, after suffering an incidence of Clostridium difficile. She caught it at the hospital and they put her into an isolation unit. But with no-one to really interact with, she started suffering from dementia.

I would go to visit her and she would ask how her mum (my nan) was. I had to break it to her that her mother had died years ago and she would be so upset.

The old are ignored despite their vulnerability. My mum was left to sit in her own mess sometimes and, during all that time in the hospital, her room was barely cleaned.

It broke my heart to see her like that.

When she was moved to a care home she came out of her shell again and started interacting because people interacted with her. But there was one incident where a woman who also had dementia acted violently. This petrified my mother and the condition overtook her as she became introverted once again.

It was only in the final months of her life, when we put her in another nursing home where they were so dedicated and were so passionate about their jobs, that she had a good end.

This is the issue. It's the people who are doing the job without having the vocation for it. They are not natural carers.

If you don't want to do the role, but are doing it just as a "job", it will have consequences for those you are supposed to be caring for.

Whereas those who love the job and have always wanted to do it, are in my experience, the best ones.

More comments

Dementia sufferers are, in most cases dealt with very sympathetically by all nurses, carers and hospitals.

The simple fact is that patients' relatives expect such people to be at the beck and call of their mum, dad or loved one, 24 hours a day, usually to the detriment of other patients. That is selfish.

But are these same relatives who shuffle their demented old mum or dad off to the care home or hospital in the first place prepared to pay the going rate for such care? No - they are not. That's why they get rid of them, (yes, get rid of them)... and then moan about the people who do their level best to look after them.

If it's so easy to look after somebody with dementia... then keep them at home... But they won't do that will they, because they have had a small taste of what professionals have to put up with daily.

Relatives often feel that they shouldn't have to lift one finger to help the staff who are, after all, looking after their loved ones. They should get off their backsides and help, instead of constantly criticising nursing staff.

All that this constant criticism of healthcare workers will do, is ensure that there are fewer and fewer of them to deal with dementia patients. Retired Healthcare Assistant, Devon

Maybe if we had basic staffing levels on shifts, we would be able to provide the best care, which is what we all strive for. Unfortunately most general wards have a mixture of dementia patients, mental health patients and other complex/end of life patients. There are never enough health care assistants, nurses or allied heath professionals and that's what relatives and visitors see.

This ultimately reflects on their view of the care given. What they don't see is staff routinely missing their breaks, because it's unsafe to leave patients, with dementia particularly. They don't see people doing double shifts at the drop of a hat, and not being able to have simple comforts such as a drink of water, because it promotes a lazy image of staff to the general public. Sarah, Manchester

My granddad is currently in hospital - he has been shunted around a number of wards, which must be confusing and distressing. The standard of care varies vastly within the same hospital, from excellent to non-existent. He requires thickened fluids and a pureed diet, and is unable - due to communication difficulties - to explain this.

On nearly every ward I have had to explain his needs repeatedly, and politely, and then finally complain. The need is life threatening and recorded throughout his notes. What more can I do to keep him safe? There are many lovely and hardworking people, but the procedures and policies within the hospital for vulnerable individuals beggar belief. Michelle Middleton, Newcastle

I have a close grandparent who was cared for to an excellent standard in an NHS cottage hospital. The staff were caring and sincere, giving us confidence that she was receiving the best possible care while recovering from a fall. I've had to move away because of work, and as my grandparent had declined further community care, this has meant a great deal of stress pushed onto close family who are themselves very ill and are at the point of tears caring for my grandparent.

With an ageing population, it needs to be accepted and addressed that too many individuals slip through the net. Who's to say how many countless unnecessary hospital admissions could be averted by proper social and community care? Mat, Carmarthen

Interviews by Dhruti Shah

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