Tuesday 3 July 2012

Treat others as you would wish to be treated yourself

Ask most people caring for a loved one with dementia what they dread the most, and a common theme will probably be hospital admission. For so many reasons, hospitals and dementia patients are a combination that is fraught with problems, and whilst pockets of good practice do exist in the NHS, far too often the experience that people with dementia and their families have is one characterised by a lack of understanding, poor care and even neglect.

Moving anyone with dementia to a new environment, let alone one that is so alien to them, will inevitably cause problems. People with dementia generally do not react well to any change, and most hospitals are not dementia friendly; they are busy, noisy, imposing places with clinical smells, high-tech equipment and a constant stream of new faces.

If an illness makes hospital admission unavoidable, the person with dementia will often be in a more confused state anyway due to infection, and that, combined with the environment they find themselves in and staff who are so busy that they do not have time to spend with patients, is a powder keg situation. Dementia patients often deteriorate in hospitals; even if the hospital successfully tackles the infection that they were admitted with, pressure sores can develop through lack of turns and regular pad changing, they can lose weight from limited or non-existent feeding of quality food (my father shockingly lost half his body-weight during a 3-month stay in an elderly mentally infirm ward), become dehydrated once they are taken off IV fluids, and their alertness and general cognition can markedly decline, possibly never then returning to its original state once they are discharged.

It is well known that hospital staff are under huge pressure. On the occasions that my father was admitted to hospital with either pneumonia or bladder infections, he very rarely had the same staff member looking after him consistently, staff were grossly over-stretched, and as a family we were spending all day every day with him just to make sure that he was fed, shaved, comforted and had all his needs met. This often also involved us demanding to see doctors or other professionals just to ensure that dad had the assessments he needed in a timely fashion, and that his care was of the same standard as someone who can articulate what they are feeling and needing.

Not only can you legitimately argue that families should not have to do this, the greatest concern is surely for the many people who have no family to speak up for them. Dementia patients deserve the same level of care as any other patient, and in fact often need significant extra attention to ensure that their needs, both physical and emotional, are met, thus giving them the best possible chance of recovery.

So how do you improve the way hospitals treat patients with dementia? Staff training is a huge issue, with staff across all disciplines having very patchy knowledge and understanding of dementia. Specialist environments need to be created that offer reassurance and extra assistance for dementia patients, and there needs to be better co-ordination across departments to ensure that the person receives all the treatment that they require, and has a discharge planned that is appropriate for their needs.

Empathetic and compassionate stimulation is important, as are therapies that engage the person with something that they enjoy. Equally vital to a successful recovery is good nutrition and hydration, which is something I wrote about in more detail here. Freshly prepared, appetising and well-presented food is needed not just for good health, but because of the feel-good factor it provides for a person’s wellbeing. It needs to be remembered that a good meal can be the highlight of someone’s day, and when those days are long and arduous, there is nothing that is more welcome.

Dementia patients often cannot articulate when they are hungry or need help to eat, and when they need assistance, this can often be very time consuming for staff if the person is to be given the quantity of food they want and need. Swallowing problems are also common as dementia progresses, and both the quality and consistency of food and the way in which the person is fed become acutely important – if any of these elements are wrong, the person can aspirate (where something taken orally goes into the lungs instead of the stomach), which can result in a potentially fatal pneumonia.

Some hospitals are becoming more dementia friendly. Taking dementia patients off of acute medical wards and into specialist wards, where they still receive expert clinical care but where staff are specifically trained in dementia, is a step in the right direction. Befriending schemes can provide a lifeline to dementia patients to reduce isolation, increase stimulation and provide non-drug related therapy. Another excellent initiative is the Butterfly Scheme, which is already in use in some hospitals. It is designed to alert all staff to the fact that someone has dementia, and through the training they have received, staff offer a specific five-point targeted response to the Butterfly symbol, enabling them to meet the additional needs of someone with dementia . ‘This is me’ leaflets are also useful in providing background information for staff, although these will only be truly effective if staff have the time to both digest that information and then act on it.

Hospitals provide life-saving treatments every day, and on many occasions the prompt and expert care that my father received saved his life and gave us precious extra years with him, but the worry of having him in hospital was immense, not just from the point of view of whether he would recover or not, but also because of concerns about the treatment and care he would receive whilst he was there. The pureed food he was given was revolting, pressure sores become worse rather than better (even though he was given an air-flow mattress), his agitation (from being in bed, hungry and ignored) would be misinterpreted as pain and inappropriate medication given as a result, he was expected to answer questions and give information that he clearly did not have the cognitive ability to provide, and he endured a constant stream of new faces, noise and confusion, often being moved to different wards very late at night.

I would like to think that the NHS, with so many caring people working for it, can provide a far higher and more consistent level of care for dementia patients across all hospitals in the UK. Most staff want to be facilitated to do their absolute best for their patients, particularly the most vulnerable, people with dementia deserve care that gives them dignity, respect, comfort and a speedy recovery, and families want reassurance and faith that everything that can be done for their loved one is done, and done to an exceptional level.

As my father always said, treat others as you would wish to be treated yourself.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886


  1. It's not just dementia patients. My elderly mother in law (now deceased) had several trips to hospital, and they were grim beyond belief. She was confused at one stage, thanks to UTIs, and every time she came home her capablities had diminished a little bit more (when she first went in she could self administer medication, afterwards, she could not). Shockingly, she went in several times able to walk and after a week in bed, couldn't walk at all - her mobility got worse with every visit. In the end, when she had leukaemia and was being threatened with yet another hospital visit, we put our feet down, and I am happy to say, she ended up well cared for in a local hospice. Because she had a terminal illness, her end of life care was fantastic. But it's shocking that the rest of it is so bad.

  2. Thank you for sharing your story Jane. Totally agree that it isn't just dementia patients who have bad experiences. Your mother-in-law obviously had a terrible time.

    My father had equally wonderful end-of-life care in a care home, which I wrote about last month on here. We were determined that he wouldn't die in hospital.

    All the best to you and your family, Beth

  3. I am a home carer. We now approach the local authority for a funding package when our dementia (or other conditions too - we took care of a young man with Batten's which is suprisingly similar, neurologically, to dementia) service users are admitted.

    I am always shocked, after 20 years of supporting people in hospital, how simple things are just not done in hospital, and that there is still no care for the whole person. Person centred care is a requirement of the CQC, why do hospitals get away with being sausage factories.

    If I treated a person with dementia the way I have seen nurses and doctors, I would lose my job, and rightly so.

    It's a systemic problem and it saddens me that in 1987 I did my first shift in a nursing home as a volunteer, and in 2012 my concerns are still the same!

  4. Superb, and right to the point, as I'd expect from you, Beth.

    My wife's latest hospital admission was, mercifully, only for one night, but the total lack of care while she was briefly in the hands of the NHS had me truly worried. No-one had even provided her with a pad, even though she was admitted wearing one. She was up to her eyes in it when she got home. It isn't at all clear whether she'd had any food or drink during her stay either.

    A member of staff had phoned me during her stay to ask about her health background, and the questions included one about incontinence, which I was able to answer clearly. Even so, that simple bit of information clearly didn't get through.

    I am just going to have to make a real nuisance of myself if she ever ends up in hospital again. It is difficult for me to get there, let alone offer personal care, as I'm blind and don't have the ability, but I can ask plenty of searching questions!

    I have my criticisms of agency care at home, but my wife's care workers deserve gold stars when set against this ghastly experience.