INTERACTIVE: ‘Snoezelen-style’ Memory Room helps stimulate dementia patients

A CARE HOME in South Africa has launched one of the first ‘Memory Rooms’ in the country, specifically created for patients with Alzheimer’s disease.

The Memory Room, which is at Willow Haven Care Home in Pretoria, provides a relaxing and stimulating environment for residents, family members and caregivers to relax in. 083

Sonja Smith, Memory Room Project Leader at Willow Haven says, “I go to Residential Care units all the time, as I am also a Funeral Director. I noticed patients were sitting passively, not doing anything and not being stimulated in any way.

“For me, it was as if they were just sitting and waiting to die. The care assistants and nursing staff on the Alzheimer’s wards would say ‘Oh don’t worry, they don’t understand why you’re here or what you’re doing anyway’.

“That really bugged me. I knew I had to do something. I had no background in how to help stimulate Alzheimer’s or dementia patients, but I knew they could be doing more than just sitting there watching the world go by.”

Whilst researching online, Sonja came across the phrase ‘Snoezelen’, which originated in Holland in the early 1980s and is coined from two Dutch terms – ‘Snuffelen’ to seek out or explore, and ‘Doezelen’, which means to relax. The philosophy of Snoezelen is to assert a ‘self-directed’ approach, in which the patient is free to explore the area and react and respond to a sensory world in their own way, liberated from control, routine and medical diagnosis.

Sonja’s Memory Room sits in a space in the middle of the Care Home, surrounded by the patients’ rooms. “Something the community and I have also made is an ‘Activity Apron’ for the patients,” adds Sonja.

“We have placed these aprons inside the Memory Room, just laying them out on chairs for patients to pick up and put on. People with dementia often fidget with their clothes and themselves.

“The apron has buttons, shoelaces, ribbons, and soft toys – anything you can think of, attached to it. This provides a really stimulating experience for the person.

“One lady refused to take her apron off, one time. It had a little bell attached to it and she was wandering around the care home ringing it, driving everybody crazy! She loved it. It was stimulating her all the time she was doing that.”

As well as the aprons, the Memory Room itself is comprised of attractive colours, comfy chairs, twinkling lights, old 30s and 40s memorabilia and other stimulating features.

Denise, who is in her 90s and has dementia, is a resident at Willow Haven, and is a huge fan of the Memory Room.

She says, “To me, this place has been made with a lot of love. It has been made with patience and remembrance – you remember what you love, don’t you?

“I look at the Memory Room from my own room. It makes me feel like I’m a little girl again in my old home. The lights in there make me feel about six years old – when my mother would open the lounge door at Christmas time and say ‘it’s ready!’

“I’m talking about the tree, of course. I think a Christmas tree would go down very well with the residents, here.”

Denise is not the only one to appreciate what the Memory Room has to offer.

“There’s a gentleman who, before the Memory Room was created, didn’t speak a word. Unfortunately he’s passed away now, but he used to come in here and sit and watch the fish floating past on the TV,” adds Sonja.

“It’s very soothing. He’d speak while he was in the Memory Room. I truly believe it was because watching those fish was triggering something inside his brain.

“If this is working and inspires others to do the same around the world, then we’ve truly achieved something special.”

Created with flickr slideshow.

Words by Rachael Heslehurst
You can follow Rachael on Twitter @rheslehurst 

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Dementia: A brave woman’s battle at 51

IMAGINE your life at the age of 31. Perhaps you’re envisaging a high-flying career, or being happily married with three kids. Fast-forward 20 years and you’re watching them grow up, beginning their own lives and building on their own hopes and dreams. But what if, at that point, you started to forget things? What if, soon enough, you might forget them, or even forget yourself? Rachael Heslehurst speaks to Emmarentia (Ems) Kuiper, aged 51, from Centurion in South Africa, and for her, this is becoming a harrowing reality…

“It all began when it first showed up on an MRI scan I had back in 2009. I was 47 years-old and had lost my hearing in my left ear. The moment the doctor said I had ‘dementia’ was like a death sentence. I felt like I wanted to run away from everything, but I didn’t know where to go. I was too young. How could this happen to me?

Image“Before I was diagnosed, I knew there was something extremely wrong with me. Because of the loss of my hearing, I was constantly suffering from vertigo. I used to be the best multi-tasker – I could do all sorts at the same time. But one day, I was in the kitchen cooking supper and my phone started ringing. I started to panic because I couldn’t answer it and cook at the same time – something I used to be able to do without a problem.”

Ems takes a deep breath as she reflects. Pouring your heart out to a complete stranger isn’t easy – and with dementia, remembering the simplest of things can be the most difficult, frustrating task of all, and often enough, impossible. Remarkably, she finds the courage to go on, takes a sip of her tea and continues.

“Before dementia struck, I was in the regulatory business. I worked for Dark Fibre Africa, managing all the negotiations with the road authorities, like provincial and national road companies, where I was doing the infrastructure. I did that for five years. Before that, I was in the financial business. I used to work for Pro Diva, coordinating the driver’s license squad for the whole of South Africa.

“I loved being independent. I’d been married for 18 years before I got divorced. The success I have accomplished in the last 14 years since then makes me really proud. I was out there making a good living for my children and myself – and I guess that’s why I can be on my own now. But there are days when I feel really lonely. Living with dementia, I feel like I need someone who can be there for me, someone to say ‘it’s okay’. I miss the companionship of a man.”

Early-onset dementia normally starts before the age of 65. In many cases, it is caused by strokes or strong genetic factors, which is called familial dementia,” says Denise Fredericks, Alzheimer’s Support, SA. 

“Why this happens at such a young age is not yet known. Their children are normally in their 20s or early 30s, just starting a family of their own and thus cannot assist with caregiving or finances. 

She adds: “Some may even still have teenagers, or children at school who have to carry the burden of caregiving. The early onset dementia patient’s greatest fear is going into a residential facility where they are placed with elderly residents. Their deep depression is evident once they are placed in a Home.”

As Ems continues to tell me her story, her Pomeranian dog Gizmo nuzzles his little nose into her leg and rests his head on her lap, almost as if to comfort her from her suffering.

“Gizmo is my world,” she says, giving him a scratch behind the ears. “He isn’t judgemental and is always happy to see me. I go to sleep with him and I wake up with him by my side. He’s a spoilt brat, though. He wakes me up at 6am nibbling my ear, as if to say, ‘wake up mummy!’ My son made him a little ladder for my bed, because he’s too small to climb onto it himself. He’s so cute. I can give Gizmo the love I’d give to a partner, and the unconditional love I get back from him is just amazing.” 

It really saddened me that this woman, at the age of 51, who should be enjoying such a monumental time in her life with the birth of her grandson, was suffering from dementia. I wondered what she did to prevent herself from spiralling into a downward slope of depression.

“I’ve always knitted,” says Ems. “I still knit and now I make mosaics and crochet. I think by doing this it keeps my brain busy, it keeps it ticking over.

“I’ve knitted gloves – but they wouldn’t be suitable for England because they’re fingerless!” she laughs. “I sell them for 45 rands. I’ve also knitted a crochet blanket for my sister’s daughter who is expecting. She doesn’t want to know if it’s a boy or a girl, so I’ve sewn little white bunny tails onto the back.

“I’m also taking part in knitting groups on a Friday to knit beanies for cancer patients,” she says, as she holds up a tiny beanie. “This is for a child. We also knit for adults.”

It’s almost easy to forget Ems has dementia when she is speaking to you. She rarely forgets what she wants to say and what is being asked, but occasionally, there was that moment where she couldn’t think of the word she wanted to use – and that was very frustrating for her.

“I’ve always been a perfectionist. Everything has always had to be structured and done in a certain way. It is really irritating when my life isn’t in order.

“I’m not scared; I need to do this on my own. I think my sons are still slightly in denial, they don’t want to be confronted by it just yet. But there is one thing I am not okay with. The time-frame between now and when I get really bad. I’ve got a problem with that. I don’t know what’s going to happen, it could be two years, five years or ten years, but I’m learning to take life one step at a time.”

If you would like to find out more about early-onset dementia, including symptoms to look out for, click here

Words by Rachael Heslehurst 
@rheslehurst

Dementia: “It’s a merry-go-round of emotions”

There are currently 800,000 people living with dementia in the UK, with over a million people estimated to be living with the condition by 2021. There are 670,000 carers of people with dementia in the UK; with family carers saving the UK over eight billion pounds a year – (Alzheimers.org.uk). In light of the government’s G8 dementia summit, Rachael Heslehurst speaks to former caregiver Jacqueline Gandy, who shares her story on the reality of caring for a loved-one with dementia.

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“It’s very difficult to watch. You see the person you love slipping away, day-by-day. The person that you knew, the person you love – dementia is taking them away.”

As upsetting as it is to speak about this, Jacqueline remains calm and composed as she tells me her story. At 63 years old, Jacqueline, who works four days a week at Manchester University, has experienced first-hand what it’s like to care for a loved-one with dementia – and that loved-one is her husband.

“Harold is 85 years old and we’ve been married 30 years. We have a very, very loving relationship. There’s a 22 year age gap, which is something I feel has gone in our favour when it comes to Harold having dementia. As the condition tends to strike people much older than me, I feel somebody 20 years older would find it much harder to care for their loved-one.”

“My husband was diagnosed with dementia seven years ago. We were part of the Claremont and Weaste Community Committee and on one of the meetings we attended, there was a presentation being given on mental health. The lady giving the presentation was talking about symptoms surrounding mental health and I just remember thinking, ‘my goodness – that’s Harold.”

Jacqueline decided to take action further, and went with her husband to see a clinical psychologist. She tells me Harold has diabetes, and when his blood sugars were low, they would mimic the symptoms of confusion and forgetfulness, which are of course, common signs of early dementia.

“Doctors kept on assuring me it was just Harold’s diabetes. But I couldn’t forget what had been said in the presentation. I knew there was something up and finally, I was making waves at Salford Royal Hospital. They agreed to carry out tests and all of a sudden, my world came crashing down.

“It was confirmed. Harold was diagnosed with vascular dementia.”

Vascular dementia is the second most common form of dementia after Alzheimer’s disease and is caused by problems in the supply of blood to the brain. People with Vascular dementia often experience problems with speed of thinking, concentration and communication, seizures and strokes and periods of severe confusion, to name but a few.

“It was a huge, huge shock,” says Jacqueline. “I ended up having to take time off work to deal with the shock and to look after him. One of the hardest parts of it is being the one to tell them – I could never tell Harold.

“He’s a practical man. He’s always done his own insulin injections and blood sugars. He looked after himself and gradually, I had to take over because of his deteriorating condition.

“Harold wondered why he was going to hospital. He wondered why he was having strange things put on his head and all I could tell him was ‘it’s to make sure you’re alright’.

“He kept saying, ‘there’s something wrong with me’ and he kept asking, ‘am I going out of my mind?’ and I’d say, ‘well it sounds like a good place, I think I’m going to come with you’. You find yourself using humour to skirt over it.

“Some people can put it into words for their loved-one, but I never could. He’s not stupid – he knows.”

Jacqueline discusses further on life at home and how caring for her husband was a 24/7 job.

“You slip into the caring role and it just takes over your life. People don’t see you as Jackie anymore – they just see you as a caregiver. There’s no structure to your life. It’s a 24/7, up all-night, worrying, unpredictable life.

“You live one day at a time but there’s no pleasure. You have no idea what you’re waking up to, where your husband may be, whether he’ll remember your name that day – you just don’t know. You can’t sleep at night because it’s just going round and around in your head. It’s a merry-go round of emotions.

“Life is easier now Harold is in residential care, it does provide me with some respite, but the house isn’t the same. Our West Highland Terrier, Hollie, misses him so much. She knew when his diabetes wasn’t good – she’d just sit and look at him when he was sat in his chair.

“They lived at home together for seven years while I was caring for him and working part-time. She’d paw at his leg when he’d fall asleep; she knew the difference between him just falling asleep and his diabetes.”

Jacqueline explains that although it’s been a difficult ordeal, the help she has received from social workers and occupational services are what helped her make it through.

“I didn’t have to fight for Harold. I couldn’t have done it all on my own. I regularly attend the Singing with Dementia sessions at Humphrey Booth Resource Centre in Swinton, where I’m able to find comfort and inspiration from the carers there.

“You see other people like you who’ve been and are still going through what you’re going through. You see people in your position coming out on the other side. You also see people coming in who are at their wit’s end and you think – ‘that was me two years ago’.

“That said, it’s still very difficult to live with. People come and go and although I’ve got my work routine, it’s still hard to go out and get my life back on track.

“I visit Harold most nights after work. Although it’s tiring, I have to go, I want to go. The other evening was lovely. I said to Harold, ‘do you want anything?’ and he said, ‘I just want to hold your hand.

“So that’s what we did. We sat there for an hour, just chatting and holding hands. It was very relaxing for both of us. While we had been at home there was no time for that, I was always on edge. Residential care has provided us with much more quality time.

“I still think why him, why me? But all I can do is to ensure everything is as good as it possibly can be for us. And I can’t do that alone. The key is to ask for help – don’t be afraid.”

If you’d like to find out more information on vascular dementia and Alzheimer’s disease click hereYou can also find out more about Singing with Dementia in Salford here

Words by Rachael Heslehurst 
You can follow Rachael on Twitter at @rheslehurst 

 

 

INTERACTIVE: Can soft laser approach help people with dementia?

SOFT laser therapy may be the answer to improving brain health, memory and prevention of Alzheimer’s disease, according to a study conceived by US chiropractor Dr Daniel Murphy.

The Brain Health protocol involves shining a 635 nm laser on five sets of points on the patient’s head for one minute each, twice a day. 

Dr Murphy has been using this protocol for several years, and feels it has prevented any age-related vision loss and has increased his ability to multi-task.

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Stephanus Lemmer, an 86 year-old man from Pretoria, South Africa, has been testing this procedure on his wife Estresia, 82, who has dementia, after finding Dr Murphy’s article online.  

He says: “I’m always researching for new advances and innovations on an international level. I came across the soft laser approach on the American market – it is $220 to buy and I’ve been using it for five weeks.

“I have noticed changes in her – but they’re minor. She’s been diagnosed for five years now. One of my thoughts is, to what extent is the Alzheimer’s advanced in her brain? Is it too late? I’m no expert, but I think it also matters how advanced the patient is before they are exposed to any sort of treatment.

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Mr Lemmer adds: “There aren’t any major breakthroughs as of yet, but I still feel hopeful because of the small changes I have seen. Whilst researching, I also came across an article about a man who treated his mother-in-law with this approach and has seen a dramatic change.

“He explained how when we visited her in the nursing home she was staying in; she could barely speak and didn’t recognise him. After the short brain treatment, she was talking and interacting, again. However, the improvement didn’t last until the next time he visited again, so I’m unsure how many times one has to do it before it is permanent – or if it ever can be.”

Sandi Radomski, allergyantidotes.com says: “The soft laser’s purpose is to stimulate different areas of the brain affected by dementia. Lasers at 635nm are the exact vibration of a healthy living cell. In acupuncture, lasers with a beam at 635nm are the equivalent to using a needle. Using a laser beam at that frequency heals the cells of the body and easily stimulates acupuncture points.”

Mr Lemmer adds: “How long these minor changes are going to last is not yet clear. We’ll keep trying, and I’ll keep researching.”

If you would like to find out more about soft laser treatment and the benefits they have on health in general, you can visit Sandi Radomski’s website here.

For tips on stimulation exercises for people with dementia, click here.

Words by Rachael Heslehurst
You can follow Rachael on Twitter at @rheslehurst 

 

 

 

INFOGRAPH: Taxi drivers offer helping hand

MAINLINE Seven Taxis has become the first cab firm in the country to make a pledge with the Dementia Action Alliance

Its 400 drivers are set to receive an awareness session to help customers with the disease through the alliance, which is on the mission to make Salford a dementia friendly city. Image

Glennys Glover will be enrolling every driver and contact staff at the firm onto Dementia Friends awareness sessions up until the end of 2014 and is also setting up a pre-payment scheme aimed at people with dementia, so they do not have to worry about having the correct amount of cash to hand.

Mainline does more than 7,000 taxi journeys a day, with many customers who are affected by the condition using the service on a regular basis.

Glennys said: “We have seen two of our long-term customers develop dementia and this was very upsetting for both our drivers and staff who knew them so well. We can really empathise with the families and friends of the people living with dementia.

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“The modern technology we already have in place, like our booking service, makes it much easier for people living with dementia to book taxis.”

Mainline Seven Taxis is one of another 21 leading organisations that have pledged their actions with Salford Dementia Action Alliance.

Glennys added: “The Salford Dementia Action Alliance was seen as a perfect opportunity to further support the community we trade in and we are happy to assist in making Salford a better place to live in for people affected by dementia.”

The Dementia Action Alliance (DAA) was set up as a result of a report published by Alzheimer’s Society, Building Dementia Friendly Communities: A priority for everyone, which showed people living with dementia felt trapped in their own homes and let down by their communities, with one in three only getting out once a week and one in 10 only manage this once a month.

The Salford DAA will be held accountable for their actions at quarterly meetings with the ultimate aim to make Salford a dementia friendly community.

See this piece also published in the Salford Advertiser here.

Words by Rachael Heslehurst
You can follow Rachael on Twitter at @rheslehurst 

 

VIDEO: An unconditional love story

WHEN you think of a person in their 90s, you may imagine them to be in a care home, unable to do anything for themselves or potentially to have passed away. Not Chris Jackson.

Meet the fit as a fiddle 94 year-old man from South Africa, who is the full-time caregiver of his beloved wife, Toekie Jackson, 87, who has Alzheimer’s disease.

Please note: Chris speaks in Afrikaans. The interview is translated into English with subtitles.

Care Home: The clandestine story behind closed-doors

CARE home abuse is a topic, which in recent weeks, has been largely circulating in the press. The BBC’s Panorama investigation of Essex’s Old Deanery care home exposed horrifying scenes of elderly residents being slapped, roughly handed and hugely neglected. This problem is not just happening in the UK. Penny Smith from South Africa, who has witnessed first-hand what lurks beneath a seemingly, controlled surface, shares her story.

Please note: All names have been changed in this article to protect anonymity.

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Elderly man stares out of window. Credit – Ulrich Joho, Flickr, Creative Commons 

It’s a smell that will stay with me forever. I will never, ever forget the lingering stench of urine that lined the care home on a permanent basis, and the overpowering kick of faeces which smacked you in the face as soon as you walked in.

My husband Albert has dementia – and he was in that care home. Once a proud, reputable man, he was now a lost soul in a dwindling, dark place where dignity was completely stolen. I couldn’t take seeing him suffer like that.

One afternoon, I’d been to visit. Soiled nappies were strewn all over the floor – the place was chaotic. I guess you could say I stepped in as a voluntary nursing assistant, as they were massively understaffed – a problem which is very common in South African care homes. I was working 12 hour stints just to keep an eye out. I couldn’t trust the place.

The room my husband was in absolutely reeked. My friend and I had tried everything to find the source. The floor, the walls, the doors and the beds were thoroughly bleached. I was baffled, but then, I found it. After pushing aside a bed a poor, old man slept in, I was greeted by only god knows how many months old urine, which was encrusted into the corner of the room after trickling down from the bed. The sheer fact that I had to do that, in a place that was supposed to provide 24 hour care for residents, a place I was supposed to be able to trust when I left, made me sick to my stomach.

Half the problem with that care home was that the majority of ‘nursing’ assistants weren’t actually trained. I think this is mainly due to a lack of government funding to put them through college and the prospect of work which didn’t require qualifications. This is the issue, though. These people are dealing with individuals with dementia among other conditions – you need to be trained in this. It is a mentally and physically, disabling disease.

There’s one man I will never forget about. Joe was a resident at the care home, he also had dementia. The first time I seen him he’d been carried in by two men kicking and screaming, he didn’t want to be inside. I took him under my wing and introduced him to my husband, and he sat there content, eating his lunch with him. He wasn’t there long. I’d found out a week later he’d refused to sleep inside because he wanted to see his daughter and the nursing staff had let him sleep beneath a tree outside with only a blanket to cover him. They didn’t know how to control him.

One morning, I’d come to visit my husband. I asked the staff how Joe was and I’ll never forget their response. Joe had died that night of pneumonia. I was absolutely heartbroken. It’s something that will haunt me forever.

Sometimes I sit and wish I’d never, ever put Albert into frail care (residential care). But I was not to know. It was one of the most difficult parts of my life.

I needed to protect myself more than anything. The dementia had caused Albert to become violent and irritable. He’d never ever hit me in all the 46 years I’d known him, and then he suddenly started to. It kills me to think about it. Part of me can understand why he was getting so angry. He was forgetting things which caused him to become annoyed with himself. He couldn’t drive anymore, he couldn’t sort out bills anymore – all those little things he was so used to doing. He lost all his independence.

Albert’s now in home care with a 24 hour around-the-clock carer. She’s absolutely amazing; she’s trained to look after people with dementia so I know I can trust her. I still visit him every day. There are times when he remembers me, and other times when he doesn’t know who I am. That’s hard, but I’ve learnt to deal with it in the best way I can. Now I know he’s in safe, capable hands and can have the one-on-one attention to provide the best possible care he needs.

Click here for advice and more info on what to do if you suspect elder neglect, warning signs, risk factors, prevention and reporting abuse. 

Words by Rachael Heslehurst
You can follow Rachael on Twitter at @rheslehurst