Not prepared to accept that life was over when she was diagnosed with dementia , this 57 year old Australian mum-of-2 has spent the last 8 years turning herself into a prominent campaigner, international speaker, PhD academic, and published author.
Not bad, considering she was advised by medics simply to give up her job, put an end to her studies, get her affairs in order, and enjoy the time she had left.
Kate has semantic dementia - a rare form of frontotemporal dementia which affects the part of the brain that controls behaviour, language skills and movement.
Early symptoms, for her, included difficulty finding the correct word, no longer understanding what the word means, and difficulties recognising objects.
She passionately believes that her symptoms should be treated as disabilities that can be dealt with given appropriate support and understanding.
To this end, she has produced the following list to help people see things from her perspective and support her quest to assist others to live positively with their dementia.
Some of the points have generated argument from others...but from Kate's point of view they are valid. What's your view...?
Kate Swaffer writes a blog that is read by thousands of people every day, and earlier this year published a book entitled 'What the hell happened to my brain? Living beyond dementia'.
Click here to visit her website
Nicci had endured the misery of witnessing the final months of her father's life be ruined by a 5 week hospital stay which reduced him from a man living well with dementia, to a shell of his former self, bewildered, immobile and inarticulate - a state from which he never recovered.
Determined to change hospital procedures that leave dementia patients alone and vulnerable in an unfamiliar environment without the support of those closest to them when they most need it, she launched John's campaign, alongside her friend Julia Jones, whose 92 year old mother June lives with Alzheimer's and Vascular Disease.
For June and Julia, the idea of an unsupported hospital admission is as unthinkable as it would be to expect a young child to cope alone in hospital. In the video clip below they explain why...
Since its launch 16 months ago, the campaign has gone from strength to strength, gaining the support of families and professionals alike. To press, 250 hospitals around the country have now pledged their support, including 2 local hospitals.
Stroud General Infirmary states:
"We believe that the involvement of Carers is fundamental to the provision of quality care. We welcome the involvement of carers whenever the patient needs them and wish for our contribution to care to complement theirs. We pledge to use ‘Johns Campaign’ to demonstrate how we care for Carers".
Gloucestershire Royal Hospital has altered its policy so that:
"Carers are welcome on all inpatient wards outside of our usual visiting hours and should speak to the Ward Sister in charge. Carers issued with a carers badge are also entitled to free parking, reduced meal costs in hospital restaurants and free drinks on the ward."
See the website for more details: www.gloshospitals.nhs.uk/carers
Click on the link here to read Nicci Gerrard's article for The Observer/Guardian which sparked off John's Campaign.
Track the campaign's progress by visiting The Guardian's dedicated online page for the campaign.
The Eva Burrows Day Care Centre in Cambuslang, run jointly by The Salvation Army and South Lanarkshire Council, takes an active approach to helping people cope with their dementia by enabling them to stay purposeful in their daily activities.
In the second half of the programme below, Paul dons an old-age simulation suit to see what it feels like to be an OAP, then chats with people at the day care centre and finds out more about how the service helps them continue to enjoy quality of life.
Centre Manager, Sandra Sneddon, hopes the documentary will help break down some of the taboos surrounding the disease. In an interview with The Herald, she explains...
“People are frightened of dementia, but I think a lot of that fear is based on the thought of – 'What if it happens to me?'
“People have to be educated that when you have a diagnosis, you start on a different phase of your life and you start on a journey.
“If you have the proper input along that journey and are assisted on that journey, life is not over. Life can be made just as fulfilling as it possibly can be, and that is what we need to do.”
At the Eva Burrows centre, the focus is on activity, getting people to do what they can.
The centre uses various props to trigger memories form the past, including a 1940's decorated room, photos of Glasgow in days gone by, and a smell box of scents associated with past lives.
Ipads are used to compile individual playlists of user's favourite pieces of music, and there are a wide range of familiar activities ranging from knitting and gardening to bingo sessions and tea dances.
The service cares for around 20 people a day, most of whom have a diagnosis of dementia and Alzheimer’s disease and are at varying stages of their illness.
Sneddon said a book which lists everything from food likes and dislikes to family history is compiled for each service user when they first arrive.
“Past history is very important, so that we can build a rapport,” she said. “People get frightened as they don’t know what has happened to them.
But if we can sit down and I ask, 'Where did you meet your husband', for example, I am speaking about something they can relate to – so all of a sudden there is a calmness and a feeling of worthiness as they can actually interact in that conversation.”
However trying to find ways to engage someone often requires some unusual thinking.
Sneddon said there was one elderly man who used to come attend the centre who staff noticed had a curious habit of brushing at the carpet with his hand.
“In his care plan, there wasn’t a lot of information, so I phoned his sister and it emerged he was a carpet fitter in his day,” she said. “So what he was doing was still checking the carpets.
“I went into a carpet shop and got a pack of samples and then said to him, ‘I need your help – I’m looking for a carpet, what kind of quality should I get?’
“He was in his element telling me what carpet I needed and being able to help me.
“We had the same conversation every day he came in – but he wasn’t aware of that. It was something he knew about and it made him feel great.”
The centre also runs a knitting bee group for service users, even though some have lost the ability to knit. Instead, they are given a tactile woollen "muffle", which is fitted with buttons, zips and Velcro, so they can sit with the group and "knit" along, using their hands.
“The aim is to involve everyone – no matter what stage they are at in their journey, they have got to feel valued and like they are taking part,” Sneddon added.
McNeillie can no longer live independently and now stays with her son and daughter-in-law, but attends the centre five days a week. The staff say as someone who was previously very active, she still enjoys taking part in activities such as washing dishes.
Her granddaughter Claire Rennie, 31, said the centre has made a huge difference to the entire family’s quality of life.
“It especially helps my mum and dad," she said, "because they still work full-time, so the centre gives them a bit of peace of mind, knowing she is around people who know what they are doing.
“The centre gives my gran a wee book, of what she has done in the day, and I will come in and read through the book with her. It gives me something to talk about with her, when obviously for people with dementia it can be quite difficult to have a conversation with them."
Rennie said her grandmother recognises her as someone familiar, but no longer knows who she is. But she said she believes the fact she is still allowed to participate as much as possible in life is helping slow the progress of the disease.
She said: “I think some people think when someone has got dementia they can’t do anything, so instinct kicks in and they just do it all for them.
“My gran has had dementia for a long time, but she has not deteriorated as quickly as I have seen others deteriorate.
“I think it is because of the level of care she is getting and we are not doing everything for her.”
She added: “When I tell people my gran has dementia, they often ask how long she has been in a care home. They just think that it is someone at the end of their days – but it is not.
“There are still issues – the other day she tried putting a cushion cover on as she thought it was a jumper.
“But even in the house, my mum gives my gran a duster and she goes and does some housework.
"We are focusing on what she can do."
Source : The Herald 10/04/16
To encourage as wide a range of people to have their say they are running an
online questionnaire to canvas the view of carers across the country. The results will help inform the direction of government policy for the following 5 years in the next Carers' strategy.
It is important that dementia carers are represented, so taking the time to complete the questionnaire will be time well spent.
Alistair Burt, Minister of State for Communities and Social Care and Lead Minister for carers across Government, launches this listening exercise in the short video below and explains why consulting the full range of carer groups is so important for shaping future policy.
Evidence has been growing for many years that hearing loss has a detrimental impact on brain function. Experts suggest that even mild hearing loss could be responsible for doubling the risk of dementia, and severe hearing loss increasing the risk five-fold.
Deafness makes it harder to concentrate and think, undermining a person's working memory. Studies also indicate that hearing loss actually changes brain structure, causing shrinkage in some regions most affected by Alzheimer's.
The belief is therefore that hearing loss causes people to miss information during conversations which isolates them. This isolation makes it harder to engage fully and this becomes a vicious circle, with gradual cognitive decline the result.
This was confirmed last year by French research carried out over a 25 year period to find out if effective use of hearing aids could slow this cognitive decline in older adults with hearing loss.
Reporting their research findings in the Journal of the American Geriatrics Society, Helene Amieva, Lead Author of the study, states "This study clearly confirms that hearing loss is associated with cognitive decline in older adults" but she goes on to explain that "Using hearing aids attenuates cognitive decline in elders presenting with hearing loss."
Use of hearing aids made a huge difference to the people with hearing loss in the study, reducing their rate of decline in cognitive skills to that more like those of people without any hearing loss.
The implication is clear. Poor rates of diagnosis and under-treatment of hearing loss in elderly adults need addressing.
The NHS estimate that while 6.7 million people in the UK could benefit from wearing hearing aids, only 1.4 million (about 20%) do so. And potential cuts to hearing aid provision could erode this percentage further.
"We are concerned that Clinical Commissioning Groups in England are considering cuts to hearing aid provision, with the North Staffordshire CCG the first to ration them since the inception of the NHS.
"As a charity we have successfully campaigned to stop other CCGs from following suit and we are calling on all CCGs to continue to provide hearing aids to all those who need them, particularly in light of the priority that NHS England has placed on hearing loss through its development of a Commissioning Framework for hearing loss services which will provide guidance for CCGs and is due to be published in April 2016.
"Hearing aids offer a lifeline to many, especially older people with hearing loss who would otherwise be sat at home alone unable to communicate with the outside world. They are a highly cost-effective intervention and are accepted to be the only viable treatment for people with adult-onset hearing loss."
"We need to ensure that the public are aware of the potentially damaging consequences of hearing loss and we must ensure that the rationing of hearing aids in some areas of NHS stops now to ensure that we don't add to the number of dementia cases leading to heartache for families and additional costs to the NHS.
"We know that hearing loss is linked with dementia - and we know that today's hearing technologies are hugely beneficial in addressing hearing loss.
"We need to increase access to hearing aids early through the introduction of an adult hearing screening programme, to ensure that everyone has the opportunity to hear and possibly delay dementia."
The part television could play in providing stimulation and keeping people with dementia connected to society should not be underestimated, argues dementia researcher Professor June Andrews.
Used as part of a planned set of activities, coordinated by carers, carefully chosen television programmes can provide opportunities for those with memory problems to reminisce, feel part of national events, and stay socially engaged.
The problem is that television has become synonomous with depressing care home environments where television just provides background noise, and disinterested residents sit mute around a screen in dreary surroundings.
But care homes should move beyond using the TV as a ‘babysitter’, says Prof Andrews - and the best already are.
Professor Andrews, who is Director of the internationally renowned Dementia Services Development Centre at the University of Stirling, argues that individual choice of programme is the key to success.
“I’ve yet to visit a care home that doesn’t rely on TV at all. But I think we need to get away from the view that it is a low grade occupation.”
For someone who has attended church all their life, but can no longer easily do so, a visiting pastor might be the next best thing. But a TV church service such as Songs of Praise could also fill the gap.
The theme tune of a favourite show can calm someone who is agitated or upset, while cookery programmes can stimulate conversation among elderly residents who may argue about merits of different ways of preparing meals. Sports programmes may help stimulate interest among life long sports fans, and national televised events can help people feel connected to society.
The exciting thing is that new technology now makes tailor made programming possible in a way that could not be done before. Programmes can be scheduled that can help keep alive the interests of someone who has lost mobility or has memory problems.
Television is something that is familiar to virtually everyone, and used properly, it can be a source of comfort, providing continuity between home and care home. If a programme is familiar to the person, even if they do not take much interest in the plot, the act of hearing the music and sitting down to watch can be calming.
But it is important that assumptions are not made about what people want to watch- either in their own room or communally. Television programmes will only stimulate or calm if they are familiar to the individual watching. Professor Andrews therefore recommends that a staff member is actively involved in planning television viewing.
“Many care homes have activities coordinators, responsible for creative arts, visits and trips. They may not think it is their job to supervise or shape the way TV is used, but with a bit of focus, it can have similar effects.
What you don’t want is for a low-waged, task-focused temporary care worker to decide; or the television sitting in the corner, ungoverned, with residents watching whatever comes on randomly.”
Giving carers a taste of what it's like to live with this devastating condition is the name of the game for a mobile unit touring the country this year. The 'Virtual Dementia Tour' is aimed at improving care standards by providing carers, both professional and family members alike, with an insight into the disorientating world inhabited by people living with dementia. And by all accounts it really works.
Writing for The Guardian, Juliet Rix explains more....
Anyone who has cared for someone with dementia will recognise many of the behaviours I have just exhibited: standing still in the middle of a room, knocking things over, failing to follow instructions, not knowing what to do with an ordinary object, cowering, sitting staring into space. So why was I behaving like this?
I was inside a dementia “Tardis”; the mobile virtual dementia tour (VDT) that simulates the world of someone with mid-stage dementia. This small truck, the first of its kind in the UK and only the third in the world, will be touring the country this year, giving carers – professional and family – an insight into the world of people with dementia. The experience is intended to improve the care they give, and by all accounts, it works.
Entering the anteroom of the Tardis, I am given uncomfortable insoles that mimic the pins and needles of peripheral neuropathy. I put on gloves that blunt sensation to my fingers and make me clumsy. My glasses are taken away (“people with dementia often forget them”) and instead I have goggles that block my peripheral vision, and headphones playing normal sounds that are too loud and too uniform to fully differentiate. And I am led through a door into a darkened room. This mix of sensory deprivation and sensory overload is very quickly disorienting and distressing. The tour only lasts eight minutes and, believe me, it is long enough.
In the subsequent debrief you are told how you behaved, reminded of what was said to you (some of which you will have missed or forgotten) and told a bit about how this all connects with dementia.
The VDT was invented by a US specialist in geriatric care, PK Beville, who founded not-for-profit organisation Second Wind to change the perception of ageing. The VDT is now in use – in non-mobile form – in 17 countries. Beville started working with elderly people 30 years ago and quickly became frustrated by what she saw as the “inappropriate use of psychoactive medication and unnecessary hospitalisation” of people with dementia. Not to mention the lack of support for often untrained carers who carry the burden of looking after people with this difficult condition.
" People with dementia are not aggressive or mentally ill; they are responding to their experience as you or I would." PK Beville
Beville wanted to change the way dementia patients were cared for by helping carers understand the reasons behind their behaviour. She says she tried interactive training, role play and videos but nothing was changing. So using her own extensive observations, interviews with people with dementia and their carers, and current scientific knowledge, she created the VDT.
A study involving 146 US workers caring for elderly people found that during the VDT most became anxious and were unable to complete simple tasks. Nearly three-quarters hummed, whistled or moaned, and 51% withdrew completely. Many found the experience so overwhelming that they behaved in ways they would normally consider completely inappropriate, says Alison Clarke of Training2Care, which operates the VDT in the UK. But it is worth it, she says, for the effect it has on people’s caring. “I had one 86-year-old woman whose husband had Alzheimer’s. She was very impatient with him. She kept saying, ‘I’ve told you that’, ‘don’t do that’. When she came out of the tour … she went over to her husband, kissed him 15 times and said, ‘I’m sorry’.”
A further US study looking at carers response to the VDT five to nine months after participation revealed they remembered it vividly and reported lasting effects on their caring – including increased empathy, sensitivity, patience and an awareness of practical things like keeping noise levels down.
April Dobson, head of dementia innovation for Abbeyfield, which runs more than 500 care homes in the UK and hundreds more worldwide, says the impact of the VDT on care is “massive”. “It makes carers realise how much their actions can influence the response and behaviour of people with dementia.”
The VDT truck will be training Abbeyfield staff and families of residents with dementia, and it is hoped others, such as firefighters, shopkeepers and members of the public. The tour costs £20, although if organisations get together to form a local hub for the truck to visit, some tours could be free. With 850,000 people diagnosed with dementia in the UK (44 million worldwide) there are few who would not benefit from understanding the condition better.
If society understood, says Beville, those with dementia wouldn’t need to be drugged and shut away. Their treatment, she believes, “is the human rights issue of our time”. If we think carefully about the individual, the environment and how we communicate, she insists, the lives of those living with dementia – and their carers – could be dramatically improved. The starting point, Beville says, is simple: “People with dementia are not aggressive or mentally ill; they are responding to their experience exactly as you or I would.”
As in fact – in the VDT – we do.
The Virtual Dementia Tour is bookable at training2care.co.uk or by calling 01376 573999
First published in The Guardian 26/01/16
Keeping track of medication can become a nightmare, particularly if you're having to take multiple medicines at different times of the day. Skipping doses or inadvertently doubling up is potentially very dangerous, yet sadly all too easy to do.
Fortunately, help is at hand.
The key to preventing confusion is to develop your own routine and stick to it! This will help you keep track of what you've taken and when, ease anxiety, and prevent accidents.
We've collected some ideas together to help with the most common problems people face, so take a look and decide which might work for you...
An app could be handy if you use your mobile phone a lot, but it should never be your sole reminder system.
It is way too easy for your phone battery to run out of charge, for you to forget your phone, or the phone to be on silent mode for it to be fully reliable.
There are several devices on the market to assist in removing tablets from the foil blister packs they come in, as well as multigrip bottle openers to help with removing the childproof lids of tablet bottles.
Here the charity provides detailed information about the huge range of products available to assist with all aspects of daily life. If you click on the section marked Medication Management, you will be asked a series of easy questions to find out your exact needs and will then be provided with a personalised report advising on possible products that could help.
As Christmas is a time we often get together with friends and relatives we haven't seen for a while, it is perhaps no surprise to learn that enquires to organisations such as the Alzheimer's Society tend to peak in the Christmas and New Year period, with people worried about how to cope with changes in a loved one's behaviour.
Children often tend to be quite blunt in their observations and questions, and it can be very hard to know how to deal with their concerns.
Question: "My mum has got dementia and my six-year-old daughter doesn't understand why her grandma sometimes doesn't know who she is and can say strange things. How can I best explain it to her?"
Answer: "Dementia isn't like a lot of other illnesses and can be hard to understand even for adults. Explaining to a child why someone they know and love is changing can be a particular challenge.
"The last thing anyone would want is for children to think these changes are in some way their fault or that if a relative doesn't seem to know who they are it's because they don't care about them any more.
"To begin with, you might want to talk to your daughter about the brain – that our brains are what allow us to think, remember who people are, and choose the things we say and do. Explaining that brains – just like other parts of the body – sometimes become ill, can go a long way towards demystifying the condition in the eyes of children and will hopefully help your daughter to make sense of the changes happening to her grandma.
"She will likely have a lot of follow-up questions, some of which may not be easy to answer. To help with these, Alzheimer's Research UK has worked with families affected by dementia to develop DementiaExplained.org.
"The site provides information tailor-made for children of different ages and brings together stories, videos, games, and accounts from young people who know someone with dementia."
"Anything that may trigger a feeling or memory is worth a try" writes Amanda Franks, describing her efforts to support her Mother who is in the later stages of Early-Onset Alzheimer's disease.
Writing for the charity, Alzheimer's Research UK, Amanda describes how her latest gift of a Memory Blanket, personalised with large scale family photos, has had a profound and moving effect on her Mum....
Alzheimer’s is a cruel disease. I’ve watched my mum fade by the day and anything that may trigger a feeling or memory is worth a try. When I came across the memory blankets sold through Alzheimer’s Research UK’s Memory Store I didn’t hesitate in ordering one.
I chose a variety of photos. I never quite know which decade Mum is in so I found a selection from across the family and across the ages; and off they went to be made into a blanket.
When it arrived I couldn’t have been more delighted. The quality was outstanding. A thick fleece, I chose a baby pink for the reverse. The pictures were crisp and of a size and colours that I hoped would grab Mum’s attention.
I took the blanket straight over to Mum at her care home. Mum was 58 when she was diagnosed with early-onset Alzheimer’s disease. While she is physically okay, at 65 she is now in the advanced stages of the disease. These days, photo albums and pictures rarely get any attention. I showed her the blanket and she smiled and nodded but following a pointing finger is no longer a natural response. As ever I talked through my latest gift and laid it out across the foot of her bed and carried on chatting. Verbal communication is almost gone but she began to stare at the blanket and smile. I can’t expect a thank you these days, but just seeing a glimmer of recognition and a feeling of warmth pass over her face made it all worthwhile.
A few days later I visited Mum. One of the carers came straight over and said that Mum had taken her by the hand and shown her a picture of me as a child on the blanket. The carer said that Mum pointed to the image and told her she had looked after that little girl. Apparently Mum was very determined to show her. This was a reaction she experienced alone in her room when a brief second of lucidity had allowed her to see and feel the love she had for her family.
The memory blanket is a wonderful item and is there in the moments of clarity. Everyone who visits mentions the blanket. I say she is wrapped in the love, warmth and most importantly the security of her family thanks to this simple blanket.
Alzheimer’s Research UK has joined forces with online retailer Bags of Love to enable people living with dementia or their loved ones to create personalised memory blankets using their chosen photos. Visitors to the site can order their memory blanket from ‘The Memory Store’, a purpose built shop for Alzheimer’s Research UK within the company’s main website, with 30% from each product sold donated to Alzheimer’s Research UK to fund pioneering research.
Article first published on Alzheimer's Research UK blog 12/11/15