Waiting To Die

Stagnant. In that one word, the nursing home resident summed up the situation perfectly. Dementia care is failing the elderly. If you suffer a heart attack, you will get the latest high-tech treatment and care. However, if you develop dementia, the likelihood is that you’ll end up in a nursing home, bored and waiting to die.

The Irish-born businessman, Gerry Robinson, has produced a new two-part television series on the care of patients with dementia. He wanted to put the spotlight on dementia care and examine the general level of care that prevails in many care homes throughout the UK. The dementia care system is antiquated and lags far behind achievements in medicine and care elsewhere. Gerry was shocked by what he found. In most of the homes he visited, he found that the elderly rarely received one-to-one attention and were left to ‘stagnate’ in soul-less lounges, bored with nothing to do. He also found that the staff in the homes had a staggering lack of specialist training to understand the complex needs of people with dementia. Health and safety regulations conspired against offering patients stimulating care.

It was not all gloom and doom however. Gerry visited one nursing home in Warwickshire that manages to make residents feel alive and happy. Residents are actively involved in helping to run their home. This approach not only works on an emotional level, but it makes good business sense too. This home is rated as ‘excellent’ and is always full. The staff are valued, so the recruitment and training costs are low. Everyone wins.

Gerry’s message is simple… “There is too much box ticking and not enough emphasis put on human contact. Dementia sufferers lose their memory but not their ability to feel. They feel joy, excitement, pleasure, pain, hurt, anger, loneliness or hopelessness and feel them intensely. This makes our duty of care to them vital.”

Good care does not have to be expensive care. We need to change the focus of dementia care from one of keeping people alive, to one of helping people to enjoy the final years of their lives in a happy and truly caring environment. Quality of life should be the number one priority. One day, it could be you or me.

The final part of this series will be shown next Tuesday, 15 December @ 9pm on BBC2 .

9 Responses to Waiting To Die

  1. Annb says:

    Somewhere along the line it became acceptable to treat people, both young and old, as a burden. Maybe this recession will remind us all how to live in a society and not just an economy. Thanks for this Steph will make sure I don’t miss it.

  2. achelois says:

    I watched the same documentary per chance. The nursing home with the innovative approach of ‘inclusivity’ was a veritable breath of fresh air.

    My best mate is a day care services manager in a day centre for the elderly. They have an upstairs and a downstairs – for the manageable and not so. she has fought tooth and nail for the upstairs – locked down patients to receive the same stimulus as those with not so advanced dementia. It is an uphill struggle.

    Our society I think is to blame to an extent – lack ofrespect in general for elders is something unique. It seems to me the Greeks, Italians, others in Europe and those from further away do not have the same ethos as we do here at least in the UK to the elderly. I am sure its not just the nursing homes who are to blame its the minority of children or loved ones who care enough to fight for the rights of the elderly vulnerable. Its not just the system alone which is to blame.

    A sad endightment (sp) of society today. It was so sad to see the couple who owned over 15 homes unable to take on board the innovative ideas from the ‘good’ home because they said their staff were too demorilised already from critism. Perhaps it was more to do with the taking away of free food for staff who actually did care and a good job they did for their elderly patients – when they worked antisocial hours and were only allowed hot water as a contribution to their drinks and the same owners who obviously entered the profession to make a great deal of money – embarrasing demorilised staff for half a loaf of bread with a night staff members name on. Seeing that as the reason why they weren’t making millions.

    Lack of appropriate training, the right ethos and lack of government support mean the majority of old people in nursing homes really do rely on staff who ‘care’ because they work long hours with no appropriate meal breaks on the minimum wage.

    Speaking english was noted as important in being able to understand the needs – an understanding of dementia through training and management who expect a reasonable living not a quick buck on the backs of the elderly vulnerable in our society. A government who understand that saving money through cutbacks actually probably causes more NHS resources to be sapped. The model shown in the good home should be run out across society as the norm. But it seemed to me that the model home was run and owned by those who really cared and not by a get quick rich ethos on the back of those who can’t speak for themselves.

    I think a lot of this comes down to lack of respect from both government and individual, families also although I fully understand the difficulties (more than you may know on reading my comment) of coping and living with a relative with dementia.

    I hope that as the above comment suggests as we all go back to basics encorporated in that is regained respect for the elderly.

    An excellent post written so well much better than my comment which is apart from grammatical and spelling troubles is somewhat vitriolic.

    Thank you for this post.

    A New Year Blogging award I think should wing itself your way for taking the time out to write it when you yourself have recently had to endure further surgery for your ongoing condition.

    I hope as an aside from the above post that you are continuing to rest well and are looking forward to a healthy Christmas. (sorry for long post its a subject close to my heart. I am sure you can’t tell)!

  3. Steph says:

    Ann – I highly recommend the programme to you. While it was very sad, it was also inspirational and was the best hour’s telly I’ve seen in a very long while.

    achelois – Thanks for this excellent contribution to my post and it’s great to know that you saw the first programme as well. I’m sorry to hear you have experience of living with a relative with dementia.

    Both of parents suffer from dementia and are now living in long-term residential care. Their physical needs are very well catered for but I do worry about their lack of interaction. The staff are fantastic but they do not generally have time to sit with the patients unless there is a problem. My father was always busy all his life but since he went into the nursing home, everything is done for him and now he walks around ‘lost’ for want of a task. He would benefit hugely from being in a ‘home’ which encouraged active involvement with day-to-day duties.

    There is no doubt that many relatives ‘dump’ their elders in care homes and rarely visit as they do not see the need. My parents visibly ‘blossom’ when they receive a family visit and they really enjoy the one-to-one interaction. I get to ‘enjoy’ the time spent with my parents but I know it would be a very different story if I was looking after them 24/7.

    I’ll fill you in on my health situation after I’ve seen the doc next Tuesday.

  4. Baino says:

    I suspect it’s similar here. I have a friend in Melbourne who’s mother is in a Sydney nursing home suffering the late stages of Dementia. Judy doesn’t visit her mother any more because she doesn’t recognise her. I think it’s so sad. Just because her mother is confused doesn’t mean that she cannot feel.

  5. Steph says:

    Baino – It’s very sad as both mother and daughter are losing out. Nobody wins in that situation.

    I sit for long hours at my mother’s bedside while she dozes in and out of sleep. Some days she barely acknowledges my presence but I know she finds the physical contact comforting as when it comes to going home time, she always gives a look as if to say “do you have to?” It’s a privilege to be able to be there for her.

    I know it can be a very different story when the dementia causes the person to become angry/violent or totally withdrawn but no matter what the circumstances, I still believe it’s important to communicate basic human kindness through one-one interaction.

  6. Ian says:

    Steph,

    I have spent the past twenty-three years spending much of my time visiting hospitals and nursing homes. I still visit people even when all communication has ceased, if nothing else it affirms the staff in their daily duties.

  7. Steph says:

    Ian – Thanks. I don’t know if you got to see the first programme or not but I hope you get a chance to see next Tuesday’s (last in the series) programme. It’s amazing viewing and great to see dementia care getting the focus it so richly deserves.

  8. achelois says:

    http://militantmedicalnurse.blogspot.com/

    The post titled ‘The Slovenian Model’. Worth a read.

  9. Steph says:

    achelois – Interesting link. Thanks!

    My parents are luckily in a nursing home which is like a mini-hospital with pharmacy, phlebotomy, physio and OT services on-site. They also have an in-house doctor to prescribe IV fluids etc. as required. The residents are only transferred to hospital if there is a sudden, unexpected deterioration in their condition, requiring investigation.

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