Alzheimer’s Society

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Dementia Awareness Week 2015 – share to show your support for the Alzheimer’s community #DoSomethingNew

Dementia Awareness Week

Dementia Awareness Week

Tomorrow (Sunday 18th May 2015) sees the first day of Dementia Awareness Week.

PatientTalk.Org are delighted to once again throw our digital wight behind this important event!  For a great overview of dementia please check out our interview with Dr Nori Graham who is Medical Director of Red and Yellow Care, Vice President of Alzheimer’s Disease International and The Alzheimer’s Society.

The Alzheimer’s Society  have developed five key informational points that they wish to promote this Dementia Awareness Week.

Dementia is not a natural part of ageing

Dementia is more common among older people , and some of us do become more forgetful as we get older, during times of stress or, in fact, illness. But dementia is a very  different sort of forgetfulness. Your memory loss will be very noticeable, and may be accompanied by mood changes and confusion/brain fog. It’s important to ask your doctor to check out any unusual symptoms as these can sometimes be treated quite easily.


Dementia is caused by diseases of the brain

Dementia is the name for a Syndrome  (collection of symptoms)  that includes memory loss, mood changes/brain fog and problems with communication and rational thought. These symptoms are brought about by a number of diseases that affect the brain. The most common of these is Alzheimer’s disease, which causes the brain cells to die. Other types of dementia include vascular dementia and Pick’s disease.

It’s not just about losing your memory

People often think of dementia as a form of memory loss. And that is often true in the first instance. But it’s more than that – it can also affect the way people think, speak, perceive things, feel and behave. Dementia makes it harder to communicate and do everyday things, but there is a lot that can be done to help.

It’s possible to live well with dementia

Many people with dementia continue to drive, socialise and hold down satisfying jobs. Even as dementia progresses, many people lead active, healthy lives, continue their hobbies, and enjoy loving friendships and relationships. Of course dementia does make it harder to do certain things, but  it is possible for someone with dementia to get the very best out of life.

There’s more to a person than the dementia

When someone is diagnosed, their plans for the future might change and they may need more help and support to keep doing the things they enjoy – but dementia doesn’t change who they are.  Where there is life there is hope.

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Alzheimer’s disease – Why I am giving my brain away!


Brains for Dementia Research

Brains for Dementia Research

This is one of those Christmas stories we love.

Robert and Lindsay Mudge are a unique couple. They plan to give away their brains after they die.

Robert was diagnosed with Alzheimer’s disease in January 2013. Alzheimer’s is a physical disease that affects the brain. During the course of the disease, protein ‘plaques’ and ‘tangles’ develop in the structure of the brain, leading to the death of brain cells. It is the most common cause of dementia.

Robert went to his local GP and was referred to Loughborough Memory Clinic and three months later, after undertaking various memory tests, he was diagnosed with early on-set Alzheimer’s disease.


Lindsay said: “Our experience of the NHS has been excellent and they have done everything they can for us. But interestingly when Bob was diagnosed, the first thing we were told was ‘It’s early on-set Alzheimer’s and there is no cure. We can maybe help the symptoms but it’s progressive and there is no cure. The medication may slow the disease down, but there is no cure.’ We made it clear that we wanted to be involved in research. They didn’t ask us.”

Robert and Lindsay were determined to find out as much information about the disease as possible and discovered the Alzheimer’s Society website, where Robert noticed an advertisement for the annual Alzheimer’s Show held in London during the summer in 2013. Robert and Lindsay decided to go and while they were there, Lindsay found an article about Brains for Dementia Research (BDR) which is a partnership between Alzheimer’s Research UK and the Alzheimer’s Society. BDR promote brain donation and develop a network of brain tissue banks for dementia research. They discussed it and Lindsay gave them a call.

Catherine Thompson is the DeNDRoN (Dementia and Neurodegenerative Diseases) research nurse for the Clinical Research Network: East Midlands based at Leicester’s Hospitals. She contacted Lindsay and Robert to discuss what was involved in donating your brain. As part of the visit, she explained that the BDR trial needs brains from both sufferers of dementia as well as non-sufferers. This is so a full comparison can be made.

Catherine explains what it is that inspired her to work in research in this specialty area: “I love my job as a nurse. I especially enjoy meeting new people who are interested in research and finding out more about them and their families’ lives. I have been a nurse for over 25 years and this has been by far the most rewarding job I have ever had.”

When asked, why be involved? Robert stated: “I just want to learn as much as I can about what’s going to happen and to help people understand how it works.”

Lindsay agreed: “Catherine brought the paperwork, took us through it and discussed it. She left us to think about it for a few weeks, before arranging a follow-up appointment where we signed a consent form. I’m quite at ease about it but it is handled very gently, carefully and professionally. At any time you can withdraw. It’s nothing to be fearful of; they’re guided by you all the time.”

“Taking part in research makes us feel better. We’re doing something. And we are doing it together.”

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Alzheimer’s disease awareness with a garden Chelsea Flower Show – Genius idea from the Alzheimer’s Society


Michael Parkinson and Fiona Phillips

Michael Parkinson and Fiona Phillips

Award-winning garden designer Adam Frost designed The Homebase Garden – ‘Time to Reflect’ in partnership with Alzheimer’s Society at this year’s RHS Chelsea Flower Show and welcomed Sir Michael Parkinson and the charity’s ambassadors, Fiona Phillips and Arlene Phillips to the launch of the garden at the start of this year’s show.

The garden has been awarded a Gold RHS Medal increasing Adam’s already impressive RHS Medal tally to six.

The garden was designed to celebrate memories and was hundreds of hours in the making with initial planning starting in July last year. Throughout the process, and to assist on the final stages of the build, Adam was joined by the Homebase Garden Academy students. The 11 students helped him to make his design a reality by putting into practice the skills learnt from Adam since joining the Academy last November.

The garden is home to over 4,000 plants including Foxgloves, Geraniums, Iris and Epimediums. As you move through the garden, the planting graduates from cool shade-loving woodland plants around the arbour into sun-loving yellow, white and blue plants reminiscent of English Springtime. Carved timber seats inspired by a seed pod are also located throughout the garden – providing the opportunity for people to sit and reflect in the colourful surroundings.

As celebrities descend on the show to marvel at the gardens we caught up with Fiona Phillips and Sir Michael Parkinson to hear what they thought about Adam’s Gold Medal winning creation for this year’s RHS Chelsea Flower Show. Fiona talks about the role gardens can play for people living with dementia.


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Dementia Awareness Week 2014. Please like and share to raise awareness of Alzheimer’s disease and other types of dementia


Dementia Awareness Week

Dementia Awareness Week

This Sunday sees the start of Dementia Awareness Week 2014.  We have produced the graphic above to help promote the week and raise awareness of the issues surrounding dementia.  

It would be really great if you could like and share this with family and friends. To find out more about the week check out the website which will give you loads of ideas for great awareness raising events.

On their website Alzheimer’s Society have a great introduction to dementia in their media section which we reproduce here.  The term “describes different brain disorders that trigger a loss of brain function. These conditions are all usually progressive and eventually severe.

Alzheimer’s disease is the most common type of dementia, affecting 62 per cent of those diagnosed. Other types of dementia include; vascular dementia affecting 17 per cent of those diagnosed, mixed dementia affecting 10 per cent of those diagnosed.
Symptoms of dementia include memory loss, confusion and problems with speech and understanding. Dementia is a terminal condition.”


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Alzheimer’s Society report finds dementia diagnosis is ‘drawn out and needlessly stressful’- Find out about new research into life with Alzheimer’s


 

Alzheimer’s

Alzheimer’s

A new report released today by Red & Yellow Care in partnership with The Alzheimer’s Society highlights that timely diagnosis, increased public awareness and improved flexibility of care need to be addressed to help pave the way for a good life with dementia.

The new report coincides with the launch of Red & Yellow Care, a new service which uniquely offers specialist, integrated dementia care that is centred around, and is tailored to the person with dementia.

The report explores what a ‘good life’ with dementia could look like and shows that currently diagnosis is often drawn out and can be needlessly stressful. What happens after diagnosis was also highlighted as being remarkably variable. Experts interviewed in the report agree that there is a need for better post-diagnostic care and support.

Arguably the single biggest barrier to achieving a good life with dementia is the acceptance and understanding of the experience of dementia in the wider community. To overcome the loneliness, alienation and segregation currently felt by many people the report states that it is imperative that dementia is accepted as a ‘new normal’, just one more of the many challenges faced by people across all walks of life. It also calls for individuals with dementia to be treated as people and not to be feared or kept ‘out of sight, out of mind’.

Additional research of members of the public commissioned to support the report backs this up by showing



that 43% of people do not think you can live a good life if you have dementia and 65% of people are scared that they or a family member will get dementia.

Unsurprisingly, there is a strong desire from individuals with dementia to remain in their own homes and to be looked after by a loved one. Yet some carers can struggle to adapt to the changing needs of their loved ones, and few have the specialist expertise to ensure that individuals receive the highest quality care at every step of their dementia journeys.

The report outlines a six-part framework for enabling a ‘good life’ with dementia – one rooted in universal notions of identity, happiness and fulfillment:

  • How to better support people with dementia to maintain their sense of uniqueness and personal identity (Respecting identity: ‘It’s not one size fits all’)
  • Achieving the right balance between memory-based activities and enjoying the here and now (Embracing now: ‘It’s a moment-living life’)
  • Ensuring people with dementia are able to experience meaningful human connections (Sustaining relationships: ‘ You don’t always need words’)
  • Ensuring people with dementia are able to experience a full range of emotions (Valuing contrast: ‘Good days and bad days’)
  • Taking risks – what are we protecting people with dementia from? (Supporting agency: ‘What’s there to worry about?’)
  • Promoting good overall health with those who are living with dementia including physical and emotional wellbeing (Maintaining health: ‘My priority in life’) 

Red & Yellow Care commissioned the report to better understand the impact of dementia on the individual, their family and carers. The right clinical care can make a big difference, but few people with dementia receive the care they need; it can be difficult to access or is completely fragmented. Red & Yellow Care was set up to overcome this fragmentation and provide high quality clinical care and support. They are a group of dementia specialists who believe in providing the quality of care that we would all want for ourselves and our loved ones.

The Red & Yellow Care team of dementia experts have ignored the status quo and designed the ideal scenario; a care system that revolves around the individual. This is delivered by providing patients with a named dementia nurse, who is supported by a fully integrated, multi-professional healthcare team. Red & Yellow Care provide a common-sense solution to a complex problem via their:

  • Diagnostic Service
  • Post-Diagnostic Care & Support Service

To find out more check out their web site at

www.redandyellowcare.com

BACKGROUND AND REGIONAL INFORMATION 

All figures, unless otherwise stated, are from YouGov Plc.  Total sample size was 2,347 adults. Fieldwork was undertaken between 26th – 27th February 2014.  The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).

43% of people in the UK do not think it is possible to live a good life if you have dementia. 

65% of people in the UK are scared that they or a family member will get dementia.