How memory apps can support effective dementia care

As the number of people with dementia continues to grow, so does the the demand for innovative new technology to support them. In this article written for the Guardian, Anna Bawden explores the role memory apps can play in effective dementia care.

When Robert Armstrong was admitted to The Uplands care home in Shrewsbury, he had a habit of waking up in the middle of night and wandering about. At first staff thought he was just a poor sleeper, but the 68-year-old would become very aggressive when care workers tried to guide him back to bed. He would often need medication to calm him down. It wasn’t until care workers started working more closely with the family to map his life history that they discovered Armstrong had been a milkman for 40 years and thought he was getting up to go to his job.

“So when he woke up at 3am, the night staff gave him a cup of tea and biscuits and then he did his ‘rounds’,” says Mandy Thorn, managing director at Uplands. “Robert had a milk crate in his room and he went round leaving milk bottles outside all the residents’ doors. At 6am he had breakfast and went back to bed, while staff picked up the bottles and put them back in his crate, ready for the next day.”

Thorn says the effect was instant and transformed Armstrong’s quality of life until his death in early 2015. “We had no more aggression and no need for medication to calm him down. And he was really happy until the day he died.”

Thorn hopes the delay in finding out such crucial information will soon be a thing of the past. From September, Uplands will be using RemindMeCare, an app that uses reminiscence therapy to get people with dementia talking about their memories. Its software automatically creates content that matches the person with dementia’s life story. In addition to photos, the system pulls images of events, favourites places, films and music from the web to create a detailed multimedia profile of the person. This is then used to help stimulate conversation and memories enabling carers to build a better relationship with the individual.

For group activities, the software can work out shared interests and help several residents to take part. And family members can upload relevant information to their relative’s profile and be actively involved in their care. “The more that you know about an individual, the easier it is to care for them,” says Thorn. “It will transform our business, make us more efficient, so staff spend more time with our residents, not on paperwork. With ReMindMeCare you have a digital record [of activities and interventions], you don’t have to worry about writing it all down.”

RemindMeCare is the brainchild of Simon Hooper and Etienne Abrahams, who both had family members with dementia. When his mother got dementia, Hooper started to put her life story on to a tablet for her carers to use. “I realised that early memories were the key to communicating with those with dementia and to improving person-centred care, and that it needed tech to record them, so that the memories would not be lost and would be available to each carer in turn,” he says.

On meeting Abrahams at a party and discovering that he was building software to store his grandmother’s memories, photos and favourite music, they both realised there was a gap in the market and decided to develop a business. After a year’s planning, they raised money from care experts and crowdfunding and RemindMeCare was born in November 2015.

Samir Patel, owner of Oaklands Rest Home in the New Forest, Hampshire, which has been using the system since May, says: “It’s had a huge impact on our residents. It’s a nice way to engage with your loved one. You can still contribute to their life in a really positive way.”

Not all dementia apps are designed for use in care settings. This month saw the launch of two new apps that people with dementia can use independently (as well as with a carer, if they choose).

Book of You and Playlist for Life use photos, words and music to enable those with dementia to reminisce with carers, family and friends, about things that were important in their lives. These apps are part of a dementia citizens project run by the innovation charity Nesta. Both apps also aim to foster in-depth research on how technology can empower people with dementia to lead more fulfilling lives. Academics at Bangor and Glasgow Caledonian universities, who developed Book of You and Playlist for Life respectively, will conduct regular surveys with 500 users of the apps. “We want to show that technology improves the lives of those with dementia,” says John Loder, head of strategy at Nesta’shealth lab. “Who do these apps really work for and how?”

The data may also challenge stereotypes. Early testing for Playlist for Life found that dementia patients did not necessarily want to listen to West End musical hits or the Beatles. “It is very easy to make assumptions about people with dementia and what they are going to like. The only thing they really wanted to listen to was Adele,” says Loder. “They liked the fact that they are listening to the same music as their children and grandchildren.”

Article by Anna Bawden, first published in The Guardian on 23rd August 2016

Sundowning and dementia : How carers can help

Sundowning describes an increase in agitation, confusion or irritability that sets in towards the end of the day as the light starts to fade and gets worse during the evening and night.


Experienced by as many as 1 in 5 people living with Alzheimer’s Disease, it is most common in the mid to later stages of the disease, and although particularly associated with Alzheimer’s it also affects people living with other forms of dementia as well.

Coming as it does at the end of the day or middle of the night when carers are already tired and less able to cope with the inevitable frustration and interruption to sleep, it is often cited by loved ones as one of the most upsetting and troubling effects of dementia.​

Medics are unsure about the causes of sundowning but most agree that fading light in the evening and darkness at night are the main triggers.

Signs of sundowning to watch out for


Confusion

Irritability

Agitation

Distress

Disorientation

Becoming demanding or suspicious

Hearing or Seeing things that aren’t there

Yelling or Pacing

Factors that might contribute to sundowning behaviour


Less light and more shadows in the house can lead to confusion and fear.


An upset to the ‘internal body clock’, resulting from the disease’s damage to the brain, can cause a biological mix-up between night and day.


Disorientation resulting from an inability to distinguish between dreams and reality.


Reduced need for sleep and disturbance in sleep patterns common in older age.


Reaction to unintended body language from a carer as frustration and tiredness kick in at the end of a long and busy day of caregiving.


Discomfort (caused by thirst, hunger, pain), depression or boredom could all make the symptoms worse.

Coping strategies for dealing with sundowning behaviour

* First and foremost seek help…

In exactly the same way that airlines instruct those looking after others to put on their own oxygen mask before attending to others, carers need to look after their own needs first. If you are emotionally drained and physically exhausted, you won’t be in the best position to stay calm and collected under pressure.


All carers need help, either from other family members or a home care provider to give you a little respite. Take a nap if possible during the day, and try to keep in touch with friends and/or a support group to keep your spirits up.


* Talk to your doctor.

It is important to rule out physical ailments (such as urinary tract infections, sleep apnea, incontinence etc) that could be contributing to sleep problems, and then discuss possible ways forward to help your loved one.


*Try to work out the particular triggersthat prompt the agitation and confusion, and attempt to alleviate them.

Ways to help

Here are our some tried and tested coping strategies that can really help…

Keep household lighting bright and avoid dark shadows.

Everyone’s eyesight deteriorates with age, so increasing light levels by adding extra lamps and using brighter lightbulbs can reduce the potential for upset and confusion caused by darkness and shadows as the light begins to fade.

Close curtains as it becomes dark to reduce the possibility of confusion caused by reflections or glare.

Do everything you can to aid sleep at night.

Stay active during the day, discourage napping and encourage gentle exercise.

Avoid, or limit, things that could disturb sleep. Try to avoid alcohol or tobacco as far as possible, and limit caffeine intake to mornings only.

Have your main meal at lunchtime and keep the evening meal small and light to aid digestion before bedtime.

Create a comfortable and reassuring sleep environment. Ensure the temperature is comfortable, fit night lights to reduce darkness, and make sure a clock is easily visible.

Keep things calm in the evening.

Relaxing music, playing cards or dominoes, or even folding laundry can all provide gentle stress relieving activities to help you wind down in the evening before bed.

Bear in mind watching TV can cause stress if the person watching can’t follow what’s going on.

Avoid arguments, keep things calm and provide lots of reassurance to maintain a calm atmosphere.

Ensure a safe environment.

Set up a baby monitor, motion detector or door sensors to alert you if your loved one is moving about in the middle of night.

Fit window locks, use a gate to block the stairs and put away anything that could prove dangerous.

Use night lights to light up dark corners in the bedroom and mark the pathway to the bathroom.

If someone wakes up agitated....

Approach with a quiet, calm, and reassuring manner.

Find out if the person is uncomfortable or needs something.

Gently tell the person what time it is.

Don’t argue.

Provide reassurance that everything is ok.

Avoid any temptation to use physical restraint. If the person needs to pace, let them do so while providing reassurance and reminders that it’s still bedtime.

Article courtesy of www.localdementiaguide.co.uk

Could diabetes drugs point the way forward for treatments for Alzheimer’s?

ALZHEIMER’S disease and diabetes are so closely related that drugs used to control blood sugar levels could also slow the progression of dementia, according to new research.

Many Alzheimer’s patients also have Type-2 diabetes and until now scientists believed mental decline could only come after the development of the metabolic disorder.

However, experts at Aberdeen University have now proven that the degenerative brain disease can also lead to diabetes in the first study of its kind.

Lead researcher Professor Mirela Delibegovic

The team, led by professors Bettina Platt and Mirela Delibegovic found the conditions are so closely related that medicines currently used to regulate glucose levels in people with diabetes may also alleviate the symptoms and progression of Alzheimer’s.

Exploring the links between Diabetes and Alzheimer's

The groundbreaking work at Aberdeen began four years ago when the experts discussed aspects of their specialities, with Platt leading an Alzheimer’s research team and Delibegovic heading work on diabetes.

“You cannot look at a disease in complete isolation. If you have a disorder of the brain, that can have quite a powerful impact on other parts of the body. That is not a one way street.

It really is a vicious circle but at the same time it gives us new ideas about interventions and therapeutics.”​

Professor Bettina Platt
Lead Researcher, Aberdeen University

The group developed a new model of Alzheimer’s disease and found that increased levels of a gene involved in the production of toxic proteins in the brain not only led to dementia-like symptoms, but also to the development of diabetic complications.

Platt said: “Around 80 per cent of people with Alzheimer’s disease also have some form of diabetes or disturbed glucose metabolism. This is hugely relevant as Alzheimer’s is in the vast majority of cases not inherited, and lifestyle factors and co-morbidities must therefore be to blame.

“Until now, we always assumed that obese people get Type-2 diabetes and then are more likely to get dementia. We now show that actually it also works the other way around. Additionally, it was previously believed that diabetes starts in the periphery – the pancreas and liver – often due to consumption of an unhealthy diet, but here we show that dysregulation in the brain can equally lead to development of very severe diabetes, so again showing that diabetes doesn’t necessarily have to start with your body getting fat, it can start with changes in the brain.”

She went on: “This study provides a new therapeutic angle into Alzheimer’s disease and we now think that some of the compounds that are used for obesity and diabetic deregulation might potentially be beneficial for Alzheimer’s patients as well.

“The good news is that there are a number of new drugs available right now which we are testing to see if they would reverse both Alzheimer’s and diabetes symptoms.

“We will also be able to study whether new treatments developed for Alzheimer’s can improve both, the diabetic and cognitive symptoms.”

The research is published in the journal Diabetologia and the team is now working with brain tissue banks and a pharmaceutical firm to take its findings forward.

However, Platt cautioned that they are unlikely to find a universal treatment for patients.

She said: “It’s unlikely to be effective for everybody. It’s quite a diverse group of patients, it’s a complex problem. We need to look at this much more holistically. Researchers need to come together. Our understanding of what the causes are is still very fragmented. We must understand much better why one person can have healthy ageing and the other one not.”

Article by Kirsteen Paterson for The National , first published 22/06/16

5 Ideas for Fathers Day for families affected by dementia

Father’s Day is the perfect opportunity to spend time together as a family, but the celebration can be stressful for people living with dementia.


Too much noise, unfamiliar situations, and hustle and bustle can all be a source of anxiety to someone coping with Alzheimer’s or one of the other forms of dementia, and can spoil what should be enjoyable time together.


The key to success is to keep things as relaxed and stress-free as possible, so keep in mind our 5 tips to keep things simple and fun...


Plan family meals carefully

Noisy environments and formal meals which often entail long periods of sitting still and waiting can be a source of restlessness and anxiety.


If you’re planning to go out, notify the restaurant in advance and request a table out of the way where you are not going to be squashed in and there is room to move about. Choose a quiet time when they are less busy so you’re not kept waiting too long.

If you’re having a family meal at home, try to keep things informal with opportunities to get up and walk about between courses and a chance for your Dad to get away from the hustle and bustle momentarily- particularly if the gathering is large, in unfamiliar surroundings or there are young children around.


Organise activities at home

If going out may prove stressful either for your Dad, or you and the rest of the family, why not organise some activities in your Dad’s own home.


It doesn’t have to be anything fancy for everyone just to enjoy time spent together.


If it’s nice weather you can try a bit of gardening. This can be relaxing and may bring back happy memories for him of playing outside as a child. Or prepare a simple meal together which you can all then enjoy at leisure.


Choose activities that involve everyone

Another great idea that can be enjoyed by everyone is organising old photographs. A fun afternoon can be spent creating a family album together reminiscing about happy times.


Create a playlist of favourite music

Music is one of the last memories to be affected by dementia so listening to favourite tracks from the person’s younger days can really enhance mood , provide opportunities for reminiscence and even a sing-along.


To get the maximum impact it’s important to find the exact songs/tunes your Dad likes, not just the general genre. Create a playlist that collects these favourite tracks together in one place so it’s easy to listen to them again on future occasions.


Stay within your Dad’s comfort zone

Try not to choose anything new or unexpected for Father’s Day as this could inadvertently increase everyone’s stress levels and end up not being enjoyable for you or your Dad.


Stick to known activities you can easily adapt to suit your circumstances. Avoid anything inflexible like the theatre or cinema, or anywhere where there are likely to be large crowds. A walk in the park or a picnic where you can choose how long you stay according to your Dad’s mood may work well.


What’s important is not what you do, but how well included your Dad feels. Be prepared to adjust how you normally do things to respond to his mood and keep the day as calm and stress free as possible.


Simply spending time together is what’s important. A pleasant afternoon spent together enjoying a simple home cooked meal, a short walk, or listening to music can really enhance your Dad’s mood and create memories of happy time spent together for you.

First published www.dementiacarestroud.co.uk

5 tips on organising a rewarding trip out with someone with dementia

For anyone living with dementia a good trip out with family or friends can lift the spirits and provide a rewarding day for all involved.

Emotional memories tend to linger and although someone living with dementia may not remember the details of a day out for long, the feelings of wellbeing and contentment that stem from happy times spent with family and friends are likely to last.

Adjustments will have to be made, but with a little forethought a happy day that proves rewarding for all, can be achieved. Planning is the key to a happy trip.

Here, Tiffany​ Smith, Dementia Specialist at national home-care provider Helping Hands, recommends her 5 top tips ....

Research your destination

Before planning any day out with a loved one with Dementia, research your destination to ensure that it is Dementia friendly. As a general rule, you should look for quieter, more scenic places to visit as opposed to cities. Cities can be quite loud and the long walking distances can be tiresome.

Consider a trip down memory lane

Consider taking a trip to somewhere that will evoke fond memories for your loved one, whether it’s somewhere they lived previously or somewhere they played as a child. This is great activity for all generations of the family as they can share memories and learn about their family history.​

Remember you don't need to travel far

Look out locally for activities that are dementia-friendly if your loved one is unable to travel long distances. There are plenty of local activities, such as a picnic in the park, that make great days out.

Plan meals carefully in advance

If you’re planning a meal out, make sure you find a quieter pub or restaurant, as increased noise can be disorientating. Make sure the pub or restaurant has plenty of room to allow your loved one to walk about while waiting for the meal – we can all become restless whilst waiting. You could even notify the pub in advance, so you don’t have as long to wait for your meals.

Stay within the comfort zone

It is sometimes best to avoid any activities that take your loved one out of their comfort zone, such as shopping, or activities that require them to remain stationary for a long period of time, like the cinema. These activities may increase anxiety, and therefore will not be enjoyable for your loved one.

​

“Meeting family at busy restaurants and other activities you associate as days out can be stressful for a person living with Dementia.

It’s important to make sure your loved one feels fully included in the celebrations of the day and be prepared to make some adjustments to make the day as calm and stress-free as possible.”

Tiffany Smith 
Helping Hands dementia specialist

Helping Hands is a long established, national home care provider that enables people to stay in their own home and live as independently as possible, by providing live-in care or hourly visits. Visit their website which provides helpful advice and a dementia toolkit, by clicking the link here - http://www.helpinghandshomecare.co.uk/condition-led-care/dementia-care/dementia-tool-kit/

Source: http://www.loughboroughecho.net/news/local-news/tips-organising-day-out-loved-11256656

Art therapy sessions extended to help more people with dementia across Wiltshire

Popular art therapy sessions set up to support people living with dementia have been expanded in Wiltshire thanks to support from the Trowbridge based charity, Alzheimer's Support.

A weekly art group has been running successfully in Pewsey for the past 3 years, but now due to popular demand, a new group has been started in Holt, near Bradford on Avon, to allow more people to benefit.

Dementia art therapy

The Art Therapy Group in Holt

Art provides an enjoyable and uplifting activity for people to express themselves creatively and can help reduce tension and stress. The groups provide a social opportunity for people with early to mid stage dementia and their carers to get together and enjoy a stimulating couple of hours that can really enhance relaxation and promote a sense of wellbeing.

Art can be therapeutic for people with dementia, who are still able to be creative and enjoy colour, texture and form when other skills may be lost. It’s also very beneficial for people to get together socially and have an enjoyable time together in a group. All our groups are very friendly and people can work at their own pace or just do their own thing in the company of others.
Babs Harris
Alzheimer's Support Chief Executive                 

The Pewsey group takes place on Wednesday mornings at Bouverie Hall, and
the Holt group at Firlawns Care Home in Holt, Melksham on Thursday mornings. 

No previous artistic experience is needed to enjoy the groups. Everyone works at their own pace and the emphasis is on enjoyment, with fun and laughter along the way.

Both groups are led by art therapist Sarah Weeks who provides inspiration and ideas, though people can work on their own projects if they prefer. The groups are funded by the Wiltshire and Swindon Community Foundation and Morrisons Foundation and everything needed is provided, though a small charge is made to help cover the cost of materials.

“Our art group at Pewsey has been so successful that we were asked for some time to provide a similar group in the west of the county, so we were delighted to get the funding in place and to have found such a good venue. It’s a joint venture with Firlawns and the first time we have run a group for people living in the community in a care home environment. It’s a lovely room and it’s working out very well” added Ms Harris.

For more information, and to view a brochure on the art therapy groups, click on the link here to visit the Alzheimer's Support website, or telephone their office on 01225 776481.
http://www.alzheimerswiltshire.org.uk/services/art-group.html

Dementia Carers…have your say on future services

"How can we improve the support for Carers?" is the key question in a Consultation exercise currently being run by the Department of Health.

In an online questionnaire aimed at canvassing the views of carers around the country, carers from as many different groups and sectors as possible are being encouraged to have their say.

​The results will be used to inform the direction of government policy for the following 5 years by way of the next Carers' Strategy.

It is important that dementia carers are strongly 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.

Have your say!

Click on the link here to the Department of Health's website to take part in the Carers' Survey ​
https://consultations.dh.gov.uk/carers/how-can-we-improve-support-for-carers

State of the art dementia care home prepares to open in Swindon

Building work is on course to prepare for the opening of Abbey House, a state of the art dementia care home in the Abbeymeads area of Swindon.

Due to open in June 2106, the development will be the result of a £8million investment by Milestones Trust, a charity set up to support people with dementia, mental health needs and learning disabilities living in Bristol and the surrounding areas.

CEO of Milestones Trust, John Hoskinson said:
“As a care provider with almost 30 years of expertise behind us, we have built a reputation on providing the best possible care and support services where they are needed, so are delighted to be bringing this expertise to Swindon, providing residential care to support those living with dementia in the local area.”

Dementia specialist care and nursing

Abbey House will provide care for 73 residents over 3 floors. Each floor is composed of small modular units of 6-7 en-suite bedrooms, each with their own open plan living and dining rooms and seating areas, to create a homely feel to the care home.

The design has been produced with a focus on creating a comfortable environment which will allow residents to stay in a familiar environment as their care needs change by providing a mix of both residential and nursing services. It meets Stirling Gold Dementia Care standards, a framework of standards that ensure the needs of those living in the home with dementia are met.

 State of art dementia-friendly  design

Examples of the specialist design include the use of transparent panelled wardrobes so people can easily see what is inside, enhanced mood-appropriate lighting, and the positioning of beds so that residents have an immediate view of the bathroom.

Residents will be able to enjoy landscaped gardens with wander paths so they can exercise in a safe and familiar environment, whilst enjoying dementia sensory gardens, with safe plants appealing to touch, taste and smell. 

The Marketing Suite for the Development was recently opened by North Swindon MP Justin Tomlinson and people are now being welcomed to come and have a look.

For more information about Abbey House, click the link here to visit Milestones Trust's website

You can find Abbey House at 40 Richardson Road, Swindon SN25 4DS

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