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After her dad received a diagnosis of mixed dementia, Lucy Parkes has felt a confusing range of emotions. Read how she’s learning to accept their ever-changing relationship.

Lucy as a baby pictured with her dad, Roger.

Firstly, let me tell you a little bit about me and Dad.

I am 30 and my dad, Roger, is 81. Our story began nearly three years ago when I noticed Dad was becoming forgetful and confused more frequently.

Early signs and diagnosis

Dad lives alone and it became clear he was struggling to care for himself. He would go out late at night and not understand why all the shops were closed. He stopped showering and would often be wearing dirty clothes. Incontinence became a problem too.

I took him to see his GP and from there it took a long, 18 months to get the diagnosis. It was only after an MRI that, last September, we were told that Dad had Vascular dementia and Alzheimer’s in the moderate stages.

Getting prepared, getting practical

Initially, the news brought a sense of relief. Now we know what is wrong with him we can focus on a cure. Surely dementia is just when old people become forgetful, right?

Unfortunately this is not the case. The doctor gently told us the prognosis. Vascular dementia was incurable. His symptoms would worsen. His memory would deteriorate and his cognitive function would decline. We needed to prepare ourselves for the inevitable and the support and care that he would now need.

There is great emphasis on the practical support needed by people living with dementia and their families. This is true, the support is greatly needed as routine tasks – washing, dressing, meal prep – become harder and then impossible to do. But as well as these practical challenges, what about the emotional side of the disease?

Feeling the impact

It has now been a year since Dad’s was diagnosed and I have felt pretty much every emotion going. Sadness, obviously, especially in the immediate period after the diagnosis when I would switch between feeling ‘fine’ to crying in the supermarket because they were out of avocados (I soon realised that I’m definitely not crying because of the avocados!).

I have felt confusion. Dementia is so complex and every day is different. Dad can be perfectly clear and lucid one day and then have no grasp of what is going on the next.

Roger was diagnosed with Alzheimer’s disease and vascular dementia last year

There has been a lot of ‘first times’ for us all. The first time Dad asked when he could go and visit his mom, who passed away nearly 30 years ago. The first time Dad confidently told me that he had been on a boat to Bristol, when I knew he had not left the comfort of his sofa. What did I say about this being a complex disease?

I have also felt self-pity. Why him? Why us? I would be lying if I said I have not felt anger and resentment towards my Dad at times too.

These feelings are quickly followed by guilt, which can become overwhelming. I feel guilty for not being more patient, for not spending enough time with him, for not doing more. I even feel guilty for those times I don’t feel guilty.

Good times and bad

I would like to stress that it is not all doom and gloom. There are still nice times. Times of love, affection, and humour too. Dad can say some pretty out there things, (note the boat trip to Bristol,) and you have to laugh, because if you do not laugh you will cry. We have done too much of that already.

So, one year on from the diagnosis, I have learned to just accept. There are going to be good times and there are going to be bad times and I am going to feel a range of emotions. Who would not?

We are still father and daughter but our relationship is different now. I guess the inevitable has happened and the roles have reversed. Dad has changed, but he is still Dad and always will be. He is just going to be a new version of Dad and I need to accept that.

At the end of the day the only thing constant in life is change.

Next steps

The post Lucy’s story: ‘Since Dad was diagnosed I have felt pretty much every emotion going’ appeared first on Alzheimer's Society blog.

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Yvonne Maxwell, Councillor for Hoxton West ward and Dementia Champion, shares the steps Hackney have taken to become a dementia-friendly community.

Hackney’s first annual Dementia Arts Festival began with a Tea Dance at Shoreditch Town Hall

There are around 1,300 people in London’s Borough of Hackney living with dementia. This is a figure that will continue to increase as time goes on.

As the rate of dementia increases, so too will demand for local dementia-friendly services.

That’s why I and fellow Councillors decided that action needed to be taken. The Council are committed to making Hackney a dementia-friendly borough.

Putting people first

The Mayor of Hackney created my role to help bring a dementia-friendly Hackney to life.

To help us shape what a dementia-friendly Hackney looks like, we listened to local people affected by dementia.

We wanted to identify what needs to happen to make Hackney a great place to live.

We learned the importance of focusing on shopping, local healthcare services and transport.

Hackney residents enjoyed classic ballroom dances including the foxtrot and the waltz Becoming a dementia-friendly Borough

We are taking big steps towards becoming a dementia-friendly Borough.

All new London Borough of Hackney staff take part in Dementia Friends Information Sessions. Plus, all staff at the Council are going to have dementia awareness training.

We’re also working with local transport providers, encouraging them to become Dementia Friends.

This will help to ensure transport staff in Hackney understand the basics of dementia. They will be able to better support passengers with dementia, allowing them to travel safely.

We fund a post at the Alzheimer’s Society who can lead work with the local community, businesses, leisure and more. This Dementia Friendly Community Coordinator is dedicated to ensuring these organisations understand how their services and communities can be dementia-friendly.

Hugh Callaghan and Adeline Masterson from Hackney Wick at the largest ever Singing for the Brain event Hackney is for everyone

As part of Dementia Action Week 2018, we ran our first Hackney Dementia Arts Festival.

Hundreds of people attended the Arts Festival from all over the Borough. It was brilliant to have so many organisations coming together.

Events took place in cinemas, libraries, leisure centres, and community halls within Hackney.

Gardening and craft workshops, art exhibitions, guided walks, outdoor board games, and dementia-friendly sing-along films were also enjoyed by people with dementia.

The Singing for the Brain session was organised by Alzheimer’s Society in partnership with Hackney Council Thank you for the music

The week-long Festival started with a tea dance. Hackney residents also took part in classic ballroom dances, including the foxtrot and the waltz.

The Festival included the largest Singing for the Brain session ever. There were over 350 people at the Aquatic Centre in the Olympic Park.

It was fantastic week of events that really helped to raise awareness and understanding of the condition. It made people with dementia feel included and involved in their community.

We are already planning our planning the festival for 2019!

Over 350 people attended the Singing for the Brain event On the horizon for Hackney

Hackney has made significant progress on making the Borough a great place to live – for everyone that lives there.

There is still more to do and we work every day to ensure people living with dementia are living the best life that they can.

We are providing schools and colleges with the information and tools needed to educate younger generations.

18 to 25-year-olds have volunteering opportunities at activity groups benefiting people living with dementia.

We encourage anyone to become a Dementia Friend, including Hackney residents.

We want everyone living with dementia to feel supported by their community.

Mayor of Hackney, Phil Glanville, and Councillor Maxwell (second right) joined by other council members at Alzheimer’s Society Roadshow

With many thanks to Hackney Council for the photos from the Hackney Dementia Arts Festival.

Next steps

The post How the London Borough of Hackney is celebrating living well with dementia appeared first on Alzheimer's Society blog.

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People with dementia often find fiddling with material a helpful way to relieve feelings of anxiety. ‘Twiddling’ can be incorporated into specially-made activity blankets, cushions, aprons, toys, muffs and mitts.

We speak with Sharon Holdstock who founded Handmade for Dementia. Through this initiative, the group are helping to reduce the anxiety of people affected by dementia in hospital with the use of their newly devised Dementia Cannula Sleeves.

Now, Sharon seeks more volunteers to join her national campaign to help knit Dementia Cannula Sleeves for local hospitals.

Sharon, pictured third from the left, with NHS staff and friends proudly modelling Dementia Cannula Sleeves. How I became interested in knitting for people with dementia

Two years ago, I was a day care volunteer at a hospice in Chester. It was there that another volunteer introduced me to a knitting pattern from the NHS.

I’m not a knitter, however the pattern from the NHS for Dementia Twiddle Mitts was so easy to make. I knitted a couple of them within a few days. Soon I realised these twiddle mitts, lap mats, boards and comfort dolls are really needed.

Dementia is prevalent in my family, and I wanted to see how many others could benefit from these items. I decided I would try and find people to help make them.

Creating a community of knitters Staff at the Countess of Chester Hospital NHS Foundation Trust received
comfort dolls and fidget boards from Handmade for Dementia

Initially, there were only about fifteen members knitting within Chester. They started to make twiddle mitts for all the care homes in their local area. They also made fidget lap mats, fidget aprons and new outfits for dolls to be given as comfort dolls to people affected by dementia.

Back in May 2016, I’d started a Facebook group dedicated to Handmade for Dementia. It is helpful for members who want to swap ideas, share new techniques, stay updated on the progress of donations and read the feedback we receive from hospitals.

We provide guidelines on how to make things safely for all of our members, including our out-of-area members via Facebook.

All items made in the Handmade for Dementia group are risk assessed (and labelled, if local to Chester) before being donated to the hospitals.

Our local knitting group in Chester meets every week and provides great social interaction for members who do not have a lot of company.

Seeking a new challenge

Once the demand for twiddle mitts slowed down, the group were trying to think of new items they could make.

In October 2017, it was knitter Eileen Copeland, a retired District Nurse, who suggested a knitted cannula sleeve. This would help ease the anxiety of an obtrusive cannula needle being inserted in the arm.

The cannula needle can also be costly, so the need for fewer to be used is something we wanted to help with.

50 Dementia Cannula Sleeves for the Betsi Cadwaladr University Health Board Wrexham Maelor A&E. Our new national campaign: Dementia Cannula Sleeves

The Dementia Cannula Sleeve is a longer twiddle mitt with cuffs at each end that can be worn on any arm.

The sleeves are made from really bright colours and textured wool. They are also lined with an inner sleeve for added comfort.

Patients are less likely to pull out their cannula needle while twiddling with the items sewn on it. These items are only ever crocheted or knitted, and therefore are very safe.

By reducing the need to re-cannulate people affected by dementia, it saves money, time and the need for sedation in some cases. In fact, this simple innovation could allow the NHS to save thousands of pounds.

Sharon, pictured with Chris Matheson Labour MP for the City of Chester, celebrating 70 years of the NHS What can be achieved with the sleeve

The Dementia Cannula Sleeves were trialled for two months at a Chester hospital towards the end of 2017. They were hailed a great success.

Our Facebook group has now grown to include over 3,000 members. There are students who find knitting a helpful way to relieve the stress of exams. We also have members who are bereaved, and other members that have joined the group who are in remission from cancer. They all say making our Dementia Cannula Sleeves is helping them, by helping others.

So far, Handmade for Dementia has made over 3,500 Dementia Cannula Sleeves and donated them to 55 hospitals in the UK since January 2018.

Not only that, this year Handmade for Dementia was nominated for a Dementia Friendly Award. It has recently been announced that we are a finalist for Trailbrazer of the year award.

Get involved

Are you interested in helping Handmade for Dementia? The group is looking for knitters who would like to help the campaign. You can join the Facebook group and volunteer to knit these Dementia Cannula Sleeves for your local hospitals.

Please note, Handmade for Dementia can only support volunteers who wish to make the Dementia Cannula Sleeves via our Facebook group for hospitals of your choice. We are focused on this national campaign and are unable support volunteers hoping to make other twiddle items, such as mitts, aprons or boards.

• Follow Handmade for Dementia on Twitter @HfdnwUkOfficial.

• Learn more about various restless behaviours – such as fidgeting, pacing and agitation – that people with dementia may develop.

The post Knitters needed to join the fight against dementia appeared first on Alzheimer's Society blog.

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As the Government prepares its Green Paper on social care reform, we spoke to the UK’s leading politicians to explain the true cost of care for people with dementia.

Shadow Secretary of State for Health and Social Care, Jon Ashworth

Last month, we attended the Labour and Conservative Party Conferences alongside people affected by dementia.

We do this every year to engage with decision makers and the public. This was all the more important this year, due to the upcoming Green Paper on social care reform. At this year’s conferences, the team spoke to MPs, local councillors and delegates about our Fix Dementia Care campaign.

Our stand took the form of an interactive shop, where people were able to step into the shoes of a person with dementia. Politicians were able to see what care was available to them, and at what cost.

Labour Party Conference

At the Labour Conference, Tommy Dunne and Paul Hitchmough, both of whom are living with dementia, were there to talk to MPs and Shadow Ministers about their experiences. Tommy and Paul share their reflections from the conference.

Tommy said:

‘What a wonderful opportunity it was for us to speak to councillors and MPs to help promote the Fix Dementia Care campaign. This is something which is very close to my heart.

‘I was able to tell them how it’s wrong that people living with dementia are facing catastrophic costs to pay for their care and support. I told them that just because we have dementia, it shouldn’t mean we should be penalised compared to if we had cancer or another medical condition.

Tommy and Paul, who both have dementia, at the Labour Party Conference

‘I was able to ask them several more questions, including: Why should a person living with dementia have to struggle to access vital care? Why should a person living with dementia have to put up with care that is often second-rate yet the most expensive?

‘The time when our carers need help the most is the time that they are kicked in the teeth, brushed aside and punished financially. I can only thank the Society for giving me the opportunity to speak with the people who can help make a difference.’

Paul said:

‘I feel the Conference was a great success. A long hard day, but very worthwhile in what our targets and achievements brought forward.

‘We met a wide range of people and I think they all went away with a different view of Alzheimer’s after meeting the team and listening to me and Tommy. We are the ‘experts’ after all, as Tommy always states! Tommy and I feel a lot of messages were bought home to everyone we met and talked to so it was a winning campaign we both felt happy with.’

Conservative Party Conference

At the Conservative Party Conference, Sandy Sweet, whose mother has dementia, told her family’s story to MPs and Ministers. Later in the day, she had an opportunity to speak directly with the Prime Minister, Theresa May.

Sandy said: Sandy Sweet, whose mother has dementia, with her local MP, Dr Phillip Lee

‘Who knew political party conferences could be so exciting?  From the minute I arrived at the interactive Alzheimer’s Society stand we had a constant stream of curious MPs. They all wanted to try their hand at purchasing care, and the shock on their faces when they received the final bill was all too clear.

‘I was delighted to receive a promised visit from my own MP, Dr Philip Lee. He took the time to listen to my concerns on dementia care funding and seemed genuinely interested in the problems people are facing in trying to access good quality care.

‘The team’s excitement levels rose dramatically in the afternoon when we heard of a possible after-hours visit from the Prime Minister! At 6.20pm she arrived and we all appreciated the opportunity to put our case forward. She clearly understands the need for change and the difficulties people face when trying to access a complex care system. Implementation within her own political agenda will be challenging, but I feel that the Fix Dementia Care team made great progress that day.’

Next steps

The post People affected by dementia show politicians the cost of care appeared first on Alzheimer's Society blog.

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After Tina’s mother Dilys was diagnosed with Alzheimer’s disease, she made it her mission to raise money for Alzheimer’s Society.

Since then, Tina’s taken on a succession of brilliant challenges, including firewalks, midnight mountain-climbing, coast-to-coast treks, and even her very own Memory Walk, organised with colleagues from the residential care home where she works. This is her story.

Tina Urquhart organised her own Memory Walk with her colleagues

My mother, Dilys Todd, was diagnosed with Alzheimer’s disease in 2001. She was a wonderful, calm, quiet lady.

My mother’s experiences of dementia

As her illness progressed I moved in to her house to help her. We had some great times – searching for fairies at the bottom of the garden, walking the dog, going to the beach collecting shells and driftwood that she would make into works of art.

My partner’s young children would come at weekends and spent many happy hours with her. My nieces and nephews were also very regular visitors. My mother loved nothing better than being surrounded by children.

Walking for Tina’s mother, Dilys

When the time came for her to move into residential care, the family worried that she wouldn’t like it.

We made her room look as much like her own bedroom as possible, and on the first day we walked in and she offered us a biscuit and showed us the view from the window. She was immediately settled, although she had never been there before!

My fundraising challenges

I then started to raise money for Alzheimer’s Society.

In 2013, I completed my first challenge – a ‘walking marathon’ from Stonehenge to Avebury. It wasn’t easy as a first challenge but I absolutely loved doing it. The feeling afterwards was of emotion and pride, and I did it again the next year!

In November 2014, I was very suddenly diagnosed with endometrial cancer and needed major surgery – but afterwards, I was determined to start fundraising again.

Tina and her sister Maddie completed a firewalk in 2015

I decided to do two challenges in 2015. The money I raised online would go to Alzheimer’s Society, and the money I raised offline would go to Cancer Research UK.

In February 2015, just before my mother’s birthday, I did my shortest walk with my sister Mandie – a firewalk! My niece filmed it and at the end, I just have the biggest grin on my face; I was nervously waiting for my turn, then terrified as they raked hot coals back over the path just before I walked.

In June that year, I walked the length of Hadrian’s Wall, coast to coast, on my own. What a fantastic few days! At times, it was very wet and windy and a lot of the time I didn’t see a soul for miles, but it was a wonderful adventure.

Between all of those challenges, I raised over £2,200 for Alzheimer’s Society.

My Mount Snowdon challenge

In May 2018, I climbed Mount Snowdon at midnight. I was not sure what to expect, as I had never even been there in daylight!

After the initial fast walk up to the path, led by super-fit adventure leaders, I soon settled into my own steady plod that I knew I could keep up for miles.

I reached the summit around 2am and the sky was just beginning to change to dramatic colours. I decided to wait for dawn. It was very cold and windy at the top…but why climb up a mountain to go back down in the dark?

The dawn was stunning and the realisation that I had climbed the highest mountain in England and Wales in the dark also dawned on me. It was beautiful.

Tina’s dog dressed up for Memory Walk

I walked back down through stunning countryside with a massive sense of achievement. That walk raised £510.

Organising my own Memory Walk

I decided to involve my colleagues in my next challenge as I work in residential care for adults with learning disabilities. This includes dementia, which often comes early for people with learning disabilities. I decided on a Memory Walk.

It was a truly great day; staff, residents, families and friends took part. Walkers of all abilities. For some it was an amazing achievement, and so far we have raised £930!

To anyone thinking of doing a challenge – I say, go for it!

Next steps

The post Tina’s story: ‘To anyone thinking of doing a challenge, I say go for it’ appeared first on Alzheimer's Society blog.

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After Tina’s mother Dilys was diagnosed with Alzheimer’s disease, she made it her mission to raise money for Alzheimer’s Society.

Since then, Tina’s taken on a succession of brilliant challenges, including firewalks, midnight mountain-climbing, coast-to-coast treks, and even her very own Memory Walk, organised with colleagues from the residential care home where she works. This is her story.

Tina Urquhart organised her own Memory Walk with her colleagues

My mother, Dilys Todd, was diagnosed with Alzheimer’s disease in 2001. She was a wonderful, calm, quiet lady.

My mother’s experiences of dementia

As her illness progressed I moved in to her house to help her. We had some great times – searching for fairies at the bottom of the garden, walking the dog, going to the beach collecting shells and driftwood that she would make into works of art.

My partner’s young children would come at weekends and spent many happy hours with her. My nieces and nephews were also very regular visitors. My mother loved nothing better than being surrounded by children.

Walking for Tina’s mother Dilys

When the time came for her to move into residential care, the family worried that she wouldn’t like it.

We made her room look as much like her own bedroom as possible, and on the first day we walked in and she offered us a biscuit and showed us the view from the window. She was immediately settled, although she had never been there before!

My fundraising challenges

I then started to raise money for Alzheimer’s Society.

In 2013, I completed my first challenge – a ‘walking marathon’ from Stonehenge to Avebury. It wasn’t easy as a first challenge but I absolutely loved doing it. The feeling afterwards was of emotion and pride, and I did it again the next year!

In November 2014, I was very suddenly diagnosed with endometrial cancer and needed major surgery – but afterwards, I was determined to start fundraising again.

Tina and her sister Maddie completed a firewalk in 2015

I decided to do two challenges in 2015. The money I raised online would go to Alzheimer’s Society, and the money I raised offline would go to Cancer Research UK.

In February 2015, just before my mother’s birthday, I did my shortest walk with my sister Mandie – a firewalk! My niece filmed it and at the end, I just have the biggest grin on my face; I was nervously waiting for my turn, then terrified as they raked hot coals back over the path just before I walked.

In June that year, I walked the length of Hadrian’s Wall, coast to coast, on my own. What a fantastic few days! At times, it was very wet and windy and a lot of the time I didn’t see a soul for miles, but it was a wonderful adventure.

Between all of those challenges, I raised over £2,200 for Alzheimer’s Society.

My Mount Snowdon challenge

In May 2018, I climbed Mount Snowdon at midnight. I was not sure what to expect, as I had never even been there in daylight!

After the initial fast walk up to the path, led by super-fit adventure leaders, I soon settled into my own steady plod that I knew I could keep up for miles.

I reached the summit around 2am and the sky was just beginning to change to dramatic colours. I decided to wait for dawn. It was very cold and windy at the top…but why climb up a mountain to go back down in the dark?

The dawn was stunning and the realisation that I had climbed the highest mountain in England and Wales in the dark also dawned on me. It was beautiful.

Tina’s dog dressed up for Memory Walk

I walked back down through stunning countryside with a massive sense of achievement. That walk raised £510.

Organising my own Memory Walk

I decided to involve my colleagues in my next challenge as I work in residential care for adults with learning disabilities. This includes dementia, which often comes early for people with learning disabilities. I decided on a Memory Walk.

It was a truly great day; staff, residents, families and friends took part. Walkers of all abilities. For some it was an amazing achievement, and so far we have raised £930!

To anyone thinking of doing a challenge – I say, go for it!

Next steps

The post Tina’s story: ‘To anyone thinking of doing a challenge, I say go for it’ appeared first on Alzheimer's Society blog.

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As temperatures begin to fall, we’re advising people affected by dementia to protect against the flu this autumn and winter.

Flu vaccination, or the flu jab, is available every year on the NHS. It helps to protect people of all ages against the flu virus and related illnesses.

But while anyone can get the flu, it’s more dangerous for some people than others. In particular, flu can be more severe for older people (aged 65+) and those with underlying health conditions, such as heart disease or dementia.

Despite this increased risk, the Department of Health and Social Care reports that only 49.2% of those with chronic neurological disease had the flu vaccination last year. This led to a rise in admissions to hospital and intensive care for flu-related illness.

Why it matters for people affected by dementia

People living with dementia are at particular risk of severe illness if they catch flu.

Dementia can make people less able to fight off infection. This means that patients are more likely to develop serious complications, including pneumonia, and are more likely to be admitted to hospital. Evidence suggests that people with chronic neurological disease are approximately 40 times more likely to die if they catch flu than those who have no other underlying health conditions.

Even for people who live well with dementia and lead otherwise healthy lives, it is still important that they help protect themselves by having the vaccine.

If you are the main carer for someone with dementia, speak to your GP or pharmacist about having the vaccine along with the person you care for.

Where and when can I get the flu vaccine?

The flu vaccine is available for free on the NHS to people who are at risk, most commonly from your GP. You can also get it at local pharmacies which are offering the service.

The NHS advises that autumn is the best time to have a flu vaccine, but you can also have it later in winter.

I had a flu jab last year. Do I need another one?

Yes.

Flu strains often change, which is why new flu vaccines are made every year. This means people affected by dementia need a flu vaccine every year too.

Although people who have a flu vaccination do sometimes still get the flu, it’s usually milder and doesn’t last as long as it would have otherwise.

Next steps

• Learn more about the flu vaccination on the NHS website
• Read our guide to staying healthy with dementia

The post Why everyone affected by dementia should have a flu jab appeared first on Alzheimer's Society blog.

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Recently, Programme Partnerships Officer Steven McFadyen visited people with dementia who enjoy playing sport and being active together. He is looking to support leisure centres, gyms and sports clubs to be more dementia-friendly.

Here, Steven shares his experience of visiting a group of golfers who are living with dementia. He learns why activities, such as golf, are important not just for the players, but also their carers and family members.

Golfers and volunteers at Lincoln Golf Centre after a fun morning of golf. What is Golf in Society?

I’d heard a lot about Golf in Society before I had the pleasure of visiting a golfing session in Lincoln.

This fantastic initiative is designed to give people living with dementia access to supported golf sessions in a local club.

By providing a person-centred approach, Golf in Society allows people with dementia to continue (or start) playing golf. They ensure the environment is safe, social and – most importantly – fun!

A social event

On a weekly basis, golfers come together and enjoy a welcoming session. They spend time on the driving range, on the putting green and out on the course.

It was wonderful to see the golfers greeting one another. Together they have a cup of tea, some lunch and enjoy being outside. It’s an ideal way to spend a morning for anyone that likes sport!

Initially, he didn’t want to go because he thought it was going to be competitive. There was an Alzheimer’s Society meeting at the golf club that opened him up to a conversation about golf. Then he came along and has loved it ever since.’

– Carer of person with dementia

Golf ‘fore’ all

While the golfers took part in a group warm-up on the driving range, I spoke with their carers in the café. We talked about the golfing sessions and dementia-friendly sporting clubs.

Sat around the table, the carers shared a sense of peer support. They told stories and explained how Golf in Society helps not only the golfers, but also the carers.

These weekly sessions provide the opportunity to create a support network for carers. The partners and family members told me how this three-hour activity gives them and the golfers much-needed time to do their own thing. They both have the chance to relax and do things they love. The carers felt this was a huge positive in their lives.

They felt these supported golfing sessions have given their loved ones with dementia a new lease of life. It is something to look forward to every week that helps to increase social confidence and improve physical fitness.

His fitness has improved enormously. He used to use the buggy to get around the course and now he walks and carries his own golf bag. We’ve even started doing our own walks too.’

– Wife and carer of person with dementia

Team photo with Golf in Society Founder, Anthony Blackburn. Out on the golfing range

It was great to watch the golfers in action. Golf in Society maintains structure and consistency to the regular sessions. This is found to be beneficial for the participants with dementia.

I watched some target practice on the driving range where there were plenty of jokes and smiles.

We headed to the putting green where golfers took on long and short putt challenges. Then, they played a few holes on the course to make the most of the sunshine.

It’s given my Dad a new lease of life.’

– Daughter of person with dementia

A positive experience

Throughout the morning, golfers enjoyed the challenges, teamwork, high-fives and celebratory air-punches.

The differing levels of golfing experience didn’t matter. The session brought so much fun, laughter and positive experiences for everyone involved.

For the people living with dementia, this wasn’t about their diagnosis. It was about golf. It would be brilliant to see more projects take on a similar model and create dementia-friendly initiatives in their sports clubs.

I don’t even think he registers it’s about his dementia, which is great, and it’s not about dementia. For him, it’s just about golf.’

– Wife and carer of person with dementia

Next steps
  • If you are interested in creating dementia-friendly sport or activity projects, please contact Steven.
  • If you are a Dementia Friends Champion, please contact your local sports clubs and leisure centres to enquire about delivering Dementia Friends Information Sessions.
  • Find out more about Golf in Society on their website.
  • Using our service finder, find local support services for people with dementia and their carers in England, Wales, and Northern Ireland.
  • Learn more about the support services Alzheimer’s Society provide.

The post Dementia-friendly golf sessions bring fun to the ‘fore’ appeared first on Alzheimer's Society blog.

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Smartphones have built-in sensors that recognise how the device is used.

Many of us use a smartphone every day. These small, handheld devices can collect an amazing amount of information.

There are sensors built into smartphones that can capture small differences in speech, memory and thinking. How we interact with the touchscreen and move the phone around can help to build a picture of how the brain works.

Alongside the University of Oxford, Alzheimer’s Society has launched a new project called GameChanger. This aims to advance dementia research through the use of technology.

The GameChanger research team have developed a smartphone application, or ‘app’. It contains a collection of memory and thinking games that test specific parts of the brain. It is these parts of memory and thinking that are thought to be affected during the early stages of Alzheimer’s disease.

Before we can spot the early signs of dementia, we need to understand the healthy brain. That’s where GameChanger can help.

In the short term, we need as many people as possible to download the app and play the games. From the data, dementia researchers can see what average performance is like. This will eventually help them see the early changes in the brains of people with dementia, and develop new treatments.

GameChanger has free, fun smartphone games that allow people to support dementia research from the comfort of their home.

Dr Claire Lancaster from the University of Oxford is part of the research team leading the GameChanger project.

Claire explains what the project means for people affected by dementia and why it’s a breakthrough for dementia researchers.

There is a real movement towards the use of technology in dementia research.

GameChanger is the first project of its kind. This smartphone technology could give future doctors a more accurate way to measure changes to our memory and thinking.

We need to understand the healthy brain and how it changes before we can spot the early signs of dementia.

We know the early signs of dementia can appear up to 15 years before a diagnosis. At the moment, doctors use outdated tests to check memory and thinking.

Take part in GameChanger for five minutes a day for a month to help advance dementia research

In the future, GameChanger will shed light on the changes in thinking and memory that are caused by the very earliest stages of dementia.

Researchers will be able to compare these aged-related changes in the healthy brain, which we will see through the GameChanger project, with the changes we see in people who have early stage Alzheimer’s disease.

GameChanger is a simple and fun way to support dementia research. You don’t even have to get out of bed to play your part! All it takes to play is five minutes every day for a month.

It really could revolutionise dementia research!’

Actor Kevin Whately, whose mother had Alzheimer’s disease, is supporting GameChanger.

It’s fun, it’s easy, you can do it at home and you’re helping research enormously.

If we can recruit a huge number of people, it will speed up the whole process of understanding what causes this awful disease and hopefully find a cure.’

Help dementia research right now - be a GameChanger - YouTube

Get involved

We need people who do not have dementia to play free games on their smartphone for five minutes a day for one month.

Have a query about GameChanger? Take a look at the Frequently Asked Questions.

Sign up to GameChanger and begin playing today.

The post Smartphone games that help to advance dementia research appeared first on Alzheimer's Society blog.

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Dementia risk is a complex puzzle. Understanding the differences of the sexes is one way that could help dementia researchers understand its causes and develop new treatments.

Dr Aoife Kiely, Research Communications Officer at Alzheimer’s Society, explores why being male or female could affect dementia risk and diagnosis.

Facts about women and dementia
  • More women are affected by dementia than men. Worldwide, women with dementia outnumber men 2 to 1.
  • Brain scans tell us that the rate at which brain cells are dying in the brain is faster in women than in men.
  • Women are more likely to live longer than men. However, although risk increases with age, dementia is caused by diseases of the brain not age alone.
The importance of female data in research

Animals are sometimes used in dementia research to understand the condition and develop new effective treatments. We know data from female animals has generally been ignored in brain research.

In the past, researchers have dismissed data from female animals or results from drugs trials that involved them. The data was seen as too odd or inconvenient.

Today, the use of female data has sparked debate among dementia researchers.

Jacqueline Mitchell, an Alzheimer’s Society funded researcher at King’s College London, says:

We are very aware of sex-based differences – we always make sure to use a balance of male and female so that we can statistically compare any differences that arise in response to drug treatments.’

It might be a surprise that we haven’t learned more in the lab about how males and females respond differently to drug treatments. However, women were only included in clinical trials from 1993.

Understanding the effect of oestrogen

Women have a lifelong relationship with the female hormone called oestrogen.

Oestrogen affects the brain, mental health, the cardiovascular system, the liver and more. There have been some studies that show oestrogen might protect brain cells.

Some researchers have suggested that if a woman has more oestrogen throughout her life, she might be less likely to develop dementia. For example, if she starts her periods at a younger age, has at least one child or goes through menopause later.

Yet, before we can think of oestrogen as a wonder drug, it has some hurdles to overcome.

Hormone replacement therapy and dementia

Oestrogen is used in hormone replacement therapy (HRT). Some women going through menopause choose this to help relieve some of the symptoms, such as hot flushes and anxiety.

HRT fell out of favour when it was decided that the risks of heart and breast cancers outweigh any potential benefits on thinking and memory.

Researchers are currently hard at work to develop better, more naturally-acting HRT. They are investigating whether starting HRT earlier could reduce dementia risk.

How sex impacts dementia diagnosis

Oestrogen affects how a woman’s brain grows and functions.

Researchers think this might be why women have a better memory for words and verbal items than men.

To assess this part of our memory we measures memory of a list of words or a short story. Women keep these skills even if they have mild memory and thinking problems.

The first step in dementia diagnosis is a verbal memory test. This poses a problem for men and women.

As women have a strong verbal memory, they tend do well on memory tests, even if they have cognitive problems. This means they are under diagnosed with dementia.

Men are more likely to be incorrectly diagnosed with dementia because their verbal memory skills might not be as strong.

At Alzheimer’s Society, we champion person-centred care. This must begin with a method of diagnosis that takes into account certain factors. These could include things such as cultural background, education, on and off days and sex.

Does heart health play a role in dementia risk?

We know that what is good for the heart is good for the head. Improving heart health seems to be a good way to lower dementia risk.

The health of a heart affecting dementia risk might also be linked to sex.

For example, high blood pressure in midlife is believed to increase risk in women but not men, even though it is more common in men.

Professor Patrick Kehoe is an Alzheimer’s Society funded researcher based at University of Bristol. He says:

It is possible that the complex relationship of oestrogen to the renin angiotensin system, which regulates blood pressure and has roles in cognitive function, influences a woman’s risk of developing Alzheimer’s.

Following menopause with the influence of oestrogen on this system a woman is at greater risk of high blood pressure and so perhaps also dementia, but we need to test this in more detail.’

Looking to the future

The G8 and the Prime Minister’s Challenge have committed to finding a disease modifying therapy for dementia by 2020.

With women being 65 per cent of the people affected by dementia, we must make sure that any new therapy works for them as well as men.

From lab to the pharmacy, it’s important dementia research, care and treatment can improve the lives of both men and women.

Learn more

The post Why is dementia different for women? appeared first on Alzheimer's Society blog.

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