5 fixes for a failing dementia care system

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Jayne-Louise Connery and her Mom Express

Jayne-Louise Connery and her mum (Photo credit: Express UK / February 2013)

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.

Wrong again.

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

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.

15 Comments

  1. I am writing this with a heavy heart because I witnessed abuse recently of my Mom and other patients not in a nursing home but in the hospital and the first thing staff and the doctor did was deny it and try to block me from taking action. My beautiful Mother never wanted to go into long term care, she worked in one for several years and she saw abuse and poor treatment, there also were also problems with short term stay homes of theft and neglect of medical care. This is in Ontario Canada where we are supposed to be compassionate people according to our Premier. Not only do we have severe problems with our system we have a horrible government run home care system and horrific lack of support for us unpaid family caregivers.While legislation is promised it’s too late for Mom, she has been forced apart from me and faces the remaining time she has left in a place far from me where I will no longer be able to visit and support her, comfort her and love her on a daily basis as per her wishes.

  2. Hi Susan, I have a complex situation such as abuse in the hospital where the doctor refused to listen to me, kept blocking me from talking and afterwards striped me of sdm is there a way I can talk to you privately for some advice?

    • Change will only happen when the Government starts accepting that changes need to happen to safeguard our vulnerable elderly.

      Too much power is given to these establishments with Care home owners being allowed to evict their residents when loved ones complain.

      Our Government needs to act and take away powers and ensure families get more say

      I have had experience of much intimidation when I raised failings of care.

      The system needs an overhaul to bring it into the 21st Century. Private care home owners are becoming very rich on the back of our sick and frail elderly. That should never be allowed to happen and I for one am sickened by it.

      • “Too much power is given to these establishments with Care home owners being allowed to evict their residents when loved ones complain…I have had experience of much intimidation when I raised failings of care.”

        Yes, Jayne, you’re right. People are afraid to speak up for fear of what might happen to their loved ones, people who do speak up may be threatened into silence.

        This culture of power, denial, intimidation and control makes it really hard to 1) expose shortcomings 2) find the causes 3) fix the problems. So serious flaws in care systems remain.

  3. Hello everyone . I’m humbled to have my thoughts expressed to those who know the journey I am travelling and as a daughter have witnessed flaws in a system that should be designed to CARE.

    Thank you all for your contributions to my thoughts and experiences and I wish you and your loved ones much love and peace as you travel your journey with dementia /alzeihmers

    Jayne Connery

  4. A really interesting article. Here, in New Zealand, once those with dementia reach a certain stage they are in a dementia unit within the home. These units have a higher staff/resident ratio. Advanced level dementia are in another higher level. My mother went into the home when she was at the advanced level. Many of our homes now have their dementia units on the third floor of a three story building! They do have a small balcony for them to go outside! Mum’s home was for dementia residents only and was a single story building. I was so lucky as the staff at Mum’s home were wonderful. However our facilities are also privately run so the mighty dollar is paramount. It cost me a lot each week to keep Mum in there – these fees are topped up by our Government. I found I was constantly on their cases about furniture etc. I think the staff were so good because one of the senior caregivers was exceptional and she ensured that other staff were also. I would like to see these Quality Caregivers given salaries to mirror their contributions. Our caregivers are poorly paid which I guess says something about the value we place on the elderly. Thank you so much for your thoughts.

    • Diane, thanks so much for your valuable insights and the shared information.

      I’m curious to know what the different staff/resident ratios are for the different levels of care…?

      I agree with you 100% that senior management/leadership sets the tone for any organization and when the top people care and model how things should be done and how people should be cared for, those on their teams normally follow suit if properly motivated and incentivized.

      As you rightly point out, caregivers should be compensated at levels which match the work they do. It’s an exhausting job and it should be properly rewarded. Care workers in Canada are underpaid and undervalued, just as you say they are in New Zealand. And yes, it speaks volumes to the value we place on the elderly.

      Thank you for the work you do in documenting your journey on your blog which I very much enjoy and would recommend to others:

      http://thejourneytoanotherworld.blogspot.ca/

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