Presenter, former model and celebrity Jayne-Louise Connery’s life changed radically when her 79-year-old mother Ellen was diagnosed with dementia and had to be given residential care in an National Health System (NHS) home. In this guest post, which appeared originally on LinkedIn and has been edited for style and length, Connery writes about how she thinks the United Kingdom’s dementia care system needs to be overhauled.
Imagine this scenario: the time has come to place your loved one who lives with dementia into a care home. The complexity of the dementia care system is overwhelming and daunting. You set out to find the best place you can – one that is equipped to deal with this devastating illness. You are sad in the knowledge your loved one is not going to be cured, but you are determined they should end their days in a loving, safe and caring environment.
This is the position I was in when I began searching for a dementia care facility for my mother who lives with dementia. I assumed those who managed care homes did so with integrity and ethics. It never dawned on me this is not the case in many facilities. I believed vulnerable adults would have the same safeguarding as young children.
I was wrong.
In fact, the dementia care system is so broken it’s difficult to collate all the problems and document them comprehensively. No one wants to keep hearing negativity; everyone wants solutions.
I have witnessed little gold nuggets in this system. Many care workers want to fulfil their calling and provide compassionate, loving care, but the ‘profit before care’ ethos of management will not allow them to do their jobs as they would wish due to cost cutting and poor administration. The result is an army of carers who are despondent, disillusioned and unhappy.
How could we fix this? Here are five ways we could make a difference:
1 ) House people living with dementia separately
People who live with dementia have complex needs that require specialized care. I have seen people with dementia being ridiculed by other elder residents who do not understand the illness. I have seen a person living with dementia screaming throughout the night keeping a non-memory-impaired resident awake and unhappy. One of the reasons this occurs is that care home owners make more money if their facility is an Elderly Mentally Impaired (EMI) unit. It’s not fair to those who live with dementia, and it’s not fair to those who don’t. We need care homes that are built and designed especially for our dementia ‘vulnerable’ elderly, places where specialised care is paramount.
2 ) Equip all dementia care homes with CCTV
This is a delicate subject. However, I believe that in a world where we have cameras on every street corner, council buildings, private buildings, apartments, shopping centres, hospitals and everywhere we turn, CCTV is a necessity in dementia care homes. Potential abusers could be deterred just by knowing cameras are in the building. Cameras would protect both staff and residents
3 ) Create a dementia homes ‘database’
I placed my precious mum into a private ‘five-star’ luxury dementia care home in Gerrards Cross. I read their brochure and was impressed by their website. It all looked good and I had no reason to fear Mum going to live there.
After a month, failings began to occur. These failings could have had a detrimental affect on my mother’s health and well-being. I dare not think what might have happened had I not spent more time at the home than the average relative. Sadly, I observed a litany of problems including the potential for over-medication, severe lack of infection control, and other errors far too long to list here.
I would like to see an information site that documents facilities’ records with respect to the level of care they provide as well as deficiencies so that relatives can make informed choices on where to place their loved ones. After the failings at my mother’s previous care home, I decided to do some investigation of my own. I discovered, among other things, that a 92-year-old woman had died of hyperthermia while residing at an MMCG facility. This information should have been available to to me before I decided to place my mother in this facility.
4 ) Do away with private dementia care homes
Since experiencing the dementia care system, I have now come to realise this is where the biggest failing lies.
Any businessman can set up a dementia care home and make a fortune from those who are sick, frail and mentally impaired. I want to see dementia care facilities bring back specialist care and offer expert care and understanding to people who live with dementia. I don’t believe anyone should profit from this devastating and cruel illness.
Care facilities should provide the vital one-to-one care residents with dementia need. I have witnessed vulnerable elderly being left alone for long periods. It’s understandable that they get frustrated, anxious and sometimes physically aggressive. I have seen vulnerable elderly eating with their fingers when there are no carers available to help them. I have seen so many shortcomings in this system over the years that I now firmly believe no one person and no organisation should profit from our sick and vulnerable elderly.
5 ) Follow the one strike and you’re out rule
If a nursery had a child die through hyperthermia would that nursery still be allowed to operate? A dementia care home operator would.
Think about that.
Jayne-Louise Connery is a dementia care advocate, relationship consultant, journalist, and former model. After years of experiencing its failings, Connery is passionate about creating change in the United Kingdom’s dementia care system.
She says the system “needs a radical overhaul, which includes stopping a “profit before care” industry that is “failing our vulnerable elderly.” Connery is also a dementia awareness fundraiser.