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Archive for the ‘Dementia’ Category

Wendy Mitchell on living with dementia and why her cat kept getting fatter

Billy the cat was on a diet but he kept getting fatter and no one knew why. “Even the vet commented on it,” revealed Wendy Mitchell, who is living with dementia.

Wendy Mitchell and Sir Martyn Lewis at the BRACE conference

Wendy, who is 62, was diagnosed with early onset dementia in 2014. Earlier this year, her book, Somebody I used to Know, became a Sunday Times best seller and Radio 4’s book of the week. Her account of being diagnosed with dementia and how she has coped with it has inspired many.

She spoke at the recent BRACE conference #Together4Dementia in Bristol and read her favourite extract from her book about her daughter’s cat Billy who kept getting fatter and fatter.

‘Billy pads into the kitchen performing a tiny dance in front of my feet before he finds the patch of sunshine on the kitchen tiles. He flops down on it while I scratch the back of his ears while he purrs his approval. I shake some biscuits into his bowl and he gets up and crunches on them noisily. He’s only allowed a few as Gemma has put him on a diet. She’s not sure why he’s put on so much weight recently. Even the vet commented on it.

‘I make myself a cup of tea and as the kettle boils, I feel Billy’s tail curling around my legs . I glance at his empty bowl. ‘Ah Billy, have I forgotten to feed you ?” He looks up with big, sad eyes, his purr audible over the boiling kettle that switches itself off, and I shake a few more biscuits into his bowl.’

Wendy goes to greet her daughter who has just come home from work. ‘Gemma and I catch up on the day. Twenty minutes must pass by like that and then Billy jumps down from my lap and sniffs at his empty bowl and sits, staring at it. “Ah no, I must have forgotten. Gemma looks at him, unsure.

‘“The vet said Billy has to lose weight; he must be getting fed somewhere else because his diet isn’t working. You are only giving him a few biscuits when you’re on Billy duty, aren’t you mum?”’

‘“Oh yes, I’m sure I do,” as I shake more biscuits into his bowl.’

‘I even see the positives in a bummer of a diagnosis’

Wendy’s account is full of humour and she talks at the conference about being a “glass half full person” saying: “I am a positive person so I even see the positives in a bummer of a diagnosis”.

Wendy used to work as a manager for the NHS at a hospital in Leeds and reveals “I used to be renowned for having a brilliant memory but it started letting me down badly. I came out of my office and I forgot where I was.

“I had so many different diagnoses at the beginning. They said it was stress or the menopause when I had already had the menopause. I knew it wasn’t stress as I am not that type of person.

“After 18 months of different memory tests, there was a SPECT can which showed a slowness in my brain.”

She is determined to reduce the stigma around the disease and encourage others to take part in clinical trials and research.

Billy the cat who kept getting fatter

“People think they have to talk to us differently,” she says. She now has had dementia for four years and still lives independently at home, where she is determined to stay for as long as possible, saying: “Living in a care home with many other people and other voices would be very distressing for me. But at the same time I don’t want my daughters to look after me as I want them to remain as my daughters.”

She has come up with strategies for living at home and says: “There are advantages to living alone as if somebody moves things about, they don’t exist for me any longer.

“At the moment I am coming up with solutions to enable me to stay living on my own at home. I have many adaptations which help me.”

She says “talking is the most powerful thing you can do to allay people’s fears when you have dementia. Talking is the most powerful thing I and my daughters can do.”

Wendy has found peer support from other people living with dementia to be hugely beneficial, saying: “We share solutions all the time and we listen to each other. We are non-judgmental and we are all going through the same thing. If one of us forgets who the prime minister is, it really doesn’t matter.”

Wendy finds images speak more to her than words so in her blogs she uses a lot of photos. “Photographs make me happy. People never take photos of people in a bad mood. When I feel anxious I go into my memory room which is filled with photographs and I look at them.

“I do travel around the country a lot going to conferences on dementia but people see me and think it is easy for me.

“But I have a pink file that tells me where I am going and has details on everything. It also has a plan B as trains don’t always go right. My Twitter friends are amazing and they will tell me what train to get if my train is cancelled.” Wendy admits that: “When I walk out of here today I will forget the details but I will remember the emotions.

Losing memories is like losing precious possessions

“Every day I lose a memory. For me when I lose memories every day, it is like losing my precious possessions every day.”

Wendy writes a blog Which Me Am I Today as she says: “It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable.

“However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living as well as you can with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.

“I can type as though dementia never entered my world as that part of my brain has not yet been affected, but that often works against me as people question my diagnosis. All I can say is, live a day in my shoes and I’m sure the reality will dawn.

“What I want is not sympathy. What I want is simply to raise awareness.”

To read Wendy’s blog click here

 

16-Nov-18 Article By: Sue Learner

 

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Just received my registration pack for this year’s Memory Walk. If you would like to sponsor me here is the link and thank you for your support. Let’s help people LIVE with Dementia and not DIE with Dementia.
https://www.justgiving.com/MW15suzancollins

New tee shirt

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Findings from Francis inquiry into NHS whistleblowing due next week http://www.nursingtimes.net/5081751.article?WT.tsrc=email&WT.mc_id=Newsletter1 …

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Why we’re thrilled our campaign to end ‘flying visits’ has succeeded

Thursday’s publication of the Care Act guidance was a huge victory in our year-long campaign to end the scandal of 15-minute care visits. We were delighted to see the government make it clear that these “flying visits” are completely unacceptable for personal care.

We launched our campaign to end 15-minute care in summer 2013, after having heard repeatedly from our staff and disabled people about the unacceptable choices people receiving care were being forced to make – often between having a drink and going to the loo. Something had to be done.

Without a clear picture of how often these inadequate visits were happening, and where, we knew it would be difficult to convince the right people that they needed to stop.

To find out what the scale of the problem was, we sent freedom of information requests to every council in England – and were shocked by the response.

The proportion of 15-minute care visits was far too high, at one in nine. These visits were also too widespread, with 60% of local authorities using them. And they were happening more and more frequently; the proportion of flying visits had increased by 15% over the previous five years.

We also heard from many people who receive these flying visits, like Mrs Taylor*:

“What can you do in 15 minutes? By the time they’ve helped me to the commode and helped me to change the time’s up. I end up choosing – have I got time to check if they can fill the hot water bottle? Do I get a drink or do I go to the toilet? If I ask them to boil the hot water and fill my flask for tea they might not have time to do the rest.”

With the scale of the problem clearly so large – and with tens of thousands of disabled and older people being stripped of their dignity by these visits every year – we knew we had to act.

Our year-long campaign saw our report into the scale of 15-minute visits make national news. We visited 10 Downing Street to hand in postcards from thousands of campaign supporters. We also took a giant mug and toilet to Westminster to send a clear message that no one should have to choose between going to the loo and having a cup of tea, and made a film with Esther Rantzen about the issue.

To their credit, politicians from all parties heard our call for action and responded. The government introduced an amendment to the care bill to put wellbeing at the heart of care commissioning, health secretary Jeremy Hunt described 15-minute care as “completely unacceptable” in parliament, and Labour leader Ed Miliband promised to call time on “clock-watch care”.

And now the government’s guidance has made it crystal clear that councils should not be buying these flying visits for personal care. We know that since our campaign began some authorities, like Calderdale, Islington and Essex, have already taken action to end 15-minute visits in their area.

Now is the time for other local authorities to follow their lead. We’ll be watching closely to make sure they do.

http://www.theguardian.com/social-care-network/2014/oct/24/care-act-15-minute-home-care-visit-disability?CMP=twt_gu

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Dementia

‘UK’s dementia care betrayal: Nine in ten care homes and hospitals fail patients, says damning report

  • CQC review finds widespread neglect, lack of care and poor training
  • They found that 90% had some aspect of poor or inconsistent care.’                                                                                                                                    Daily Mail 13th Oct 2014

Reading this is worrying but not a surprise. We’re hearing more now about poor care. It can be very stressful if you need to find a care/nursing home for your loved one with dementia, a care/nursing home that provides care and support with a dedicated staff team.

But as we read above, there is ‘a staggering 90 per cent of the care homes and hospitals inspected found to have aspects of variable or poor care’. So where does this leave us for who are trying to find a good care home for our loved one. And why is this happening?

I have seen great staff across the country who genuinely care for those they support. They are dedicated and provide person centred support, and many a time work long hours due to staff shortages/sickness. I have also seen staff that have delivered poor care. Sometimes, it’s not their fault. The staff/client ratios in these large homes are minimal and it would be helpful for the Care Quality Commission to bring in a minimum number of clients to staff ratio. The former Commission of Social Care Inspection [CSCI] had this.

Dementia is a specilised area and need staff who are trained to support people with dementia. It is not good enough to receive training on how to support older people, training is needed on how to support individuals with dementia. People can live well with dementia, but only if staff have the knowledge on how to support the individual to do this.

Is a care/nursing home needed for the individual with dementia or can they be supported at home, with a Personal Budget? [Personal budgets give you flexibility in how your care needs are met.]

What is needed in a care/nursing home to enable a person with dementia to be cared for, and be safe? As a minimum this is needed:

The care assessment completed prior to going into the care/nursing home needs to give an accurate full description of the individual’s needs.

We need to get the right quality of care. Staff to be recruited who genuinely want to care and support others [not those who see it as ‘just a job’].

High turnover rates lead to lack of continuity. Do the managers carry out an Exit Interview with staff to see why they’re leaving? If they did, this may help them see the reasons and if the reasons are to do with the Home then the manager can look to rectify this.

Money available to train staff in this specialised area and this money to be used for training and nothing else.

Time for staff to complete training.

Staff to discuss with their supervisor/manager afterwards to see if the training met their need.

Good client staff ratio on shifts.

Time for staff to carry out best practice [and not cut corners due to short staffing].

Senior on shift to lead the shift, monitor, observe and discuss poor practice if apparent.

Staff to receive regular 1-1 confidential supervision sessions where training needs are identified, performance discussed, feedback given and concerns shared.

Staff to be able to express their concerns without fear of reprisal or losing their job.

What makes a good care/nursing home?

Many care/nursing homes can look grand from the outside, and sometimes on the inside too. But this doesn’t necessarily mean that they pay the same amount of time cleaning the place to supporting the people who live there.

Some of the things I feel should be in place:

Care/support plans are individual to the person [and not the same as everyone elses]. The plans should take in the uniqueness of the individual, their interests, abilities, needs and preferences.

Staff must treat individuals with dignity and respect.

Systems should be in place to help the individual with choices. This can be objects to refer to or pictures/photographs.

Dedicated and trained staff team.

Keyworker system in place.

Good leadership and support for staff.

Clients and family are listened to.

House meetings where the people living there are able to express opinions and make suggestions for their home.

Happy, relaxed atmosphere.

Activities for the individual to choose if s/he wishes to participate.

Useful websites:

Alzheimer’s Society http://alzheimers.org.uk/

Age UK http://www.ageuk.org.uk/

Health Watch http://www.healthwatch.co.uk/

The Silver Line http://www.thesilverline.org.uk/

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Government orders review of Deprivation of Liberty Safeguards

Move comes just three months after officials insisted that there was ‘no fundamental flaw’ in Dols scheme

The government has ordered a review of the Deprivation of Liberty Safeguards (Dols) less than three months after it told peers there was no need to rethink the legislation.

The Dols legislation, which applies to care homes and hospitals, will now be added to a Law Commission review of frameworks for authorising deprivation of liberty, the commission announced today. Deprivation of liberty cases in settings not covered by the Dols, notably supported living, require authorisation by the Court of Protection.

The Law Commission project had been restricted to drafting a new legal framework to cover deprivation of liberty in settings not covered by the Dols, notably supported living. But recent changes in case law, notably a Supreme Court ruling in March that has led to a surge in deprivation of liberty cases, and consultation with stakeholders prompted the Department of Health to request that the project be extended to cover the Dols, the commission said.

The project will publish a consultation paper next summer and a final report in 2017.

The move to extend the commission’s review to include the Dols marks a significant change in stance from the government.

In June, in its official response to a highly-critical House of Lords committee report that described the Dols as “not fit for purpose”, the government insisted there was no “fundamental flaw” in the Dols legislation. It rejected the peers’ call for the Dols to be scrapped and replaced with a system that was simpler and more grounded in the principles of the Mental Capacity Act.

Nicholas Paines QC, the Law Commission project lead, said “The department’s decision is very welcome.  Our timetable for the project remains unaffected.  We expect to publish a consultation paper in the summer 2015 and our final report and draft legislation in summer 2017.”

In response to the announcement, the Department of Health said: ”We are committed to making sure that the Mental Capacity Act is used to protect and empower people receiving care and support. We are looking at the potential impact of the Supreme Court judgement on local authorities and will consider findings in the autumn.”

http://www.communitycare.co.uk/2014/09/08/government-orders-review-deprivation-liberty-safeguards/?cmpid=NLC|SCSC|SCNEW-2014-0910

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We failed elderly because we were too scared care home owners would sue us, watchdog admits

Head of watchdog for care homes admits: we failed to protect vulnerable because we feared being sued

http://www.telegraph.co.uk/health/healthnews/11021374/We-failed-elderly-because-we-were-too-scared-care-home-owners-would-sue-us-watchdog-admits.html

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