( This is a feature that I did for You Magazine for one of my assessments. It got a first.)
All over the world, Dementia sufferer numbers are rising at a worryingly fast rate. Kyra O’Reilly investigates how this could affect the NHS and the public’s future.
An elderly woman sits in a chair in the corner of a ward, playing with the hem of her paisley skirt. She looks around, but doesn’t see the reality. She thinks she’s in another time, long ago, folding up the washing at home.
She doesn’t realise she’s seeing her grandchildren when they visit, and sometimes she hardly recognises her own daughter. One day, and it may be quite soon, she will not remember her husband, who she has been with for 45 years. After that, even her own face could scare her.
Six years ago, this woman was the picture of health. She was full of fun and laughter. Her memories were vivid and she was life and soul of family gatherings. Now, she is confused, scared and feeling alone. In her moments of ‘sanity’, she can get violent because she doesn’t know where she is and why she is there. Other times, she rocks back and forth, imitating the rocking chair she used to have.
The chances of you knowing someone with dementia are very high currently, and it could be higher still in the future. Dementia is a psychiatric syndrome that causes severe memory loss, as well as causing a decline in normal brain functions like language, judgement and understanding. Experts fear that the NHS and care homes alike will not be able to cope with the rising number of cases.
Richard Sharples, a specialist doctor for elderly mental health, said: ‘[Although] real progress has been made in making medical professionals aware of the need for the early detection of older person’s dementia and significant progress has been made recently in allowing psychiatrists to prescribe anti dementia drugs in the early phase of the illness, psychiatrists are under pressure from primary healthcare trusts, not to do scans and to cut down on prescribing anti dementia drugs.” This is simply because scans and drugs cost too much currently to take care of the number of dementia patients.
The most common form of Dementia is Alzheimer’s disease, which 62% of dementia sufferers have. However, there are several other kinds, including vascular dementia, Huntington’s disease and Parkinson’s disease.
According to a recent report from Dementia UK, there are currently 750,000 people in the UK with dementia, two thirds of which are women. It has been estimated that by 2021, that number will increase to 940,000, and by 2051, that number will have risen to a staggering 1.7 million.
With these figures, the question is; how will this affect the healthcare system?
Currently, there are many jobs at risk in the NHS, including doctors and nurses. With the NHS in danger of being the next to face monumental spending cuts, this number of frontline staff could drop perilously low. The NHS has taken a hit this year already, with staff having a pay freeze and wards closing in several areas.
Mary*, a senior staff nurse who wishes not to be named, said: “The pay freeze is the government yet again kicking us nurses [when we’re down]. We always take a low [pay] raise anyway and they feel they are safe to do this as nurses very rarely strike- we are humane. I believe the NHS services will continue to go downhill. Targets will not be met by [tired] staff and places will continue to close.
“I have been a nurse for 33 years and it has never been such a stressful job as it is now. There was nowhere near as much time spent in the office. There were not so many rules, regulations and targets to meet.”
“There are too many extra jobs that [nurses] are expected to carry out on a daily basis for running of the ward. And [we have] to meet expectations of hospital trust and statistics.” Said the 49 year-old,”Far too much time goes on paperwork/computer work and not enough on quality patient time. This all has a knock on effect.”
The fact that there is not enough staff in the wards and nursing homes is one that urgently needs to be addressed, as dementia can be dangerous in certain circumstances. For example, if a sufferer spills a drink and then forgets it, they could slip over and injure themselves. The staff that take care of them should be able to notice and clean it up before this happens, however, if there are too few staff, something this simple can easily be missed.
Another dangerous situation could be if a patient is confused and lashes out at a member of staff. Mary has had some of her patients bite her, tear her hair out, nearly break her arm and try to strangle her. If there are too few members of staff, or many of them are on ‘one to ones’ (which is where the patient has to be watched all the time in case of a suicide attempt), then a staff member could be in danger of their own patients.
According to Mary, despite being elderly, scared patients can muster a lot of strength. “[The staffing conditions in my ward are] appallingly low to dangerous at times. There have been a number of occasions recently; if it had not been for the expertise of the nurses, serious injuries could have occurred,” said Mary.
It seems that the main issue fuelling the staff situation is the amount of funding the NHS gets. Without the right funding, and a larger amount of staff, the NHS will fail to properly take care of its patients. And since this number is set to rise astronomically, this could be endangering many people who should be getting the help they need.
Richard Sharples said: “There is an urgent need for better care of patients who are in hospitals. But we need to understand care pathways, multi disciplinary care planning. There needs to be urgent thinking and research into better ways of providing social care.
“For example, there could be more 24 hour care at home or people caring for patients in private homes as a retirement job. Purpose built villages with facilities that care for patients throughout the course of the illness and improved provision of care for patients with challenging behaviours would all be much better than the current care we are giving them.”
But this takes money, and it may be that it is not just tax payers’ money that this may end up coming from. The relatives of dementia patients already have a lot to think about, but it may fall on their shoulders to also take care of them if there is still not enough staff.
“Spouses [and other family members] are finding it more and more difficult and impossible to get any assistance without paying for it. Or worse, if the person with mental health problems becomes acutely unwell and has to go to hospital,” said Mary.
Jessica is a 20 year-old accountant from Hampshire, whose grandmother was diagnosed with dementia and is now in a care home. She found this out when she was quite young, and therefore did not fully understand what was happening.
She explains her experiences: “I don’t really get to see her, but when I do she often isn't sure who I am, but then after a few regular visits she remembers me. She knows who my mum and aunty are ‘cause she sees them the most.
“Because it gets worse gradually you hardly notice it, and it’s when you haven’t seen her for a while that you realise how bad it is. But you just try not to let it get to you because you could become quite upset.”
Alison, 56 is Jessica’s mother, who has strong views on the way that people with dementia should be treated: “I think there needs to be more appropriate care homes, with people correctly trained for dementia and not just for old age. There aren’t enough carers in the homes that know what to do with dementia sufferers to help them.”
Mary and Richard both agree that there are problems with the way that care homes are run. Mary said that there are very few homes for elderly and mentally ill and fewer still if they have specific problems like aggression. This is because they will not be accepted in most homes.
It is also increasingly difficult to get funding for these people. If they have no money it has to be decided by a panel if they meet the criteria for continuing healthcare. If they say no, the relatives are basically out of options.
The NHS could be in danger of not taking care of a number of patients properly, and it seems that they need to make changes quickly, not to mention get the funding to make these changes.
Mary had many ideas on how NHS care could be improved. She said: “With Dementia care in particular I would set up homes that really do care and treat people as if it was their home.”
She talked about a recent documentary that showed such a home, where the staff did everything with the dementia sufferers, to their pace and abilities, they would do in a normal home. For example, they would help them do the washing, cooking and cleaning. The staff loved their jobs, so they didn’t leave and had great morale. It really showed in the faces of the people they were caring for. However, there was a waiting list to get in.
“I believe all homes should be like this in the future. With the more difficult to place person a more specialist unit should be available with specialist staff who could rotate their posts if they wished. Also, I feel more money could go into dementia research and see if we can detect early and find earlier treatments that are effective,” Mary said.
The NHS is in real need of funding as medical care as it is being spread ever more thinly. It seems that it is up to the public need to get involved in order to make sure that their care is in safe hands.
Richard Sharples said that “most care homes are now being run by large private firms for profit this trend needs to be reversed and more care homes should be publicly funded.” He said that public funding is the way forward because the training of staff in care homes is known to be poor and that care is worse in private homes.
He goes on to say: “[Private homes] also use more bank staff, which is bad for patients and staff as there is no job security, low pay, bad hours, no pension plan or sick pay provision. Private homes are not accountable to the public regulations for older person’s standards. Private firms place an emphasis on improving familiar by making homes look like hotels to gain custom in direct contradiction of proven research about how to provide a purpose built homely home.”
In the future, we may see the decline of dementia wards and care homes, with relatives replacing the carers who were properly trained to understand and help dementia patients because the number of staff to patients is too low. We may also see the decline of dementia healthcare in the NHS simply because there is not enough nursing staff or people willing to study for these positions.
A general climate of fear about possible impending cuts to staff numbers is bad for the team morale, so managers need to improve communication with staff and how they manage change. The NHS also needs to take charge in this issue, to let the public know how this is likely to affect them if it does happen.
Richard Sharples said: “There is a trend to separating ward and community teams. Some examples are; by closing local wards, by appointing a single consultant and by placing patients out of area because local ward is full. This could lower the quality of care for patients and the quality of support for carers. This entire issue needs to be well known to the public so there is hope for future dementia sufferers.”
With the right funding, and the right decisions being made by the government and the NHS, there may be hope for people like the confused and lonely woman in the corner of her ward, and for their families, who they may be able recognise for that little bit longer.