Lewy body dementia

Provided by Parkinson's UK

Dementia with Lewy bodies

 

 

Dementia with Lewy bodies is diagnosed when someone has the symptoms of dementia either before or at the same time as developing Parkinson’s-like problems with movement (called motor symptoms). But in some cases of dementia with Lewy bodies, no motor symptoms may develop at all.¹

The name comes from the Lewy bodies – tiny protein deposits – that can be found in certain parts of the brain of people with the condition.

This information sheet looks at the symptoms and causes of dementia with Lewy bodies. It provides some practical advice on how life can be made easier for the person affected and their family, friends and carers. 

 

What is dementia?

 

Dementia symptoms are caused by a significant loss of brain function. There are different forms of the condition and each person will experience dementia in a different way.²

 

Some people develop dementia after living with Parkinson’s for some time. When someone has Parkinson’s motor symptoms for at least a year before experiencing dementia, this is known as Parkinson’s dementia.³ Dementia with Lewy bodies is diagnosed when someone has the symptoms of dementia either before or at the same time as developing Parkinson’s-like problems with movement.

 

Find out more: see our information sheet Parkinson’s dementia.

 

 

 

What are the symptoms of dementia with Lewy bodies?

 

“Occasionally, my mum is very confused when I first arrive, then improves and becomes more lucid by the end of a visit.”  Barbara, whose mum has dementia with Lewy bodies

 

Dementia with Lewy bodies affects a person’s, memory, language, concentration and attention. It also affects their ability to recognise faces, carry out simple actions and their ability to reason.

 

People with this form of dementia commonly experience visual hallucinations, which can be quite vivid. This can happen early on in the condition. They might also experience difficulty in judging distances and movements, which can cause them to fall over for no apparent reason.¹

 

The condition can also cause someone to experience episodes of confusion, which can change a lot from hour to hour or over weeks or months.¹

 

Some people may also develop Parkinson’s-type symptoms, such as slowness of movement, stiffness and tremor. In some cases, a person’s heart rate and blood pressure can also be affected.⁴

 

What causes dementia with Lewy bodies?

Lewy bodies are tiny protein deposits that develop inside some nerve cells in the brain, causing these cells to die. The loss of these cells causes dementia. It’s not yet understood why Lewy bodies occur in the brain and how they cause this damage.

 

Dementia with Lewy bodies shares similarities with Alzheimer’s and Parkinson’s. It’s progressive, so the symptoms will get worse over time.²

 

Dementia is age related, so it’s rare that someone under the age of 65 will develop dementia.

 

How is dementia with Lewy bodies diagnosed?

A specialist will diagnose dementia with Lewy bodies based on the person’s symptoms, their medical history and the results of an examination. There is no specific blood test for this condition, but tests on memory and thinking will help confirm what the problem is. In some cases, a specialist may request a brain scan to determine what kind of dementia a person has.²

 

 

What can be done to help?

 

Medication

There isn’t a cure or specific treatment for dementia with Lewy bodies at the moment, but there are medications that some people may find effective.

 

Recent research suggests that some people may benefit from dementia medications called cholinesterase inhibitors.⁵ But it’s important to note that not all cholinesterase inhibitors are licensed for use in the UK.⁶

 

Some people may respond well to Parkinson’s medication, especially if they have Parkinson’s-type symptoms like stiffness or rigidity. However, some side effects of these drugs can make the symptoms of dementia worse, especially confusion.⁷

 

Since hallucinations and delusions may often be associated with this condition, some doctors may recommend the use of antipsychotic (also known as ‘neuroleptic’) medications. In general, these medications should be avoided, because they may make problems with movement worse.⁸ But in some cases, if behavioural symptoms are becoming especially problematic, very low doses of these medications may have to be used. If this medication is prescribed, the healthcare professionals in charge of a person’s care should monitor the situation carefully.⁵

 

If you have any questions about medication, speak to your GP, specialist or Parkinson’s nurse (if you have one) for more advice and information.

 

Support from professionals

Using medication to treat dementia can be helpful. But it’s also useful for people to get treatment from a wide range of healthcare professionals, such as physiotherapists, occupational therapists, dietitians and speech and language therapists. They can help the person with dementia and those supporting them.

 

You can be referred to these health professionals through your GP, specialist or Parkinson’s nurse. In some areas, you may be able to refer yourself at your local hospital or community health clinic.

 

 

Legal matters

If you have been diagnosed with early stage dementia, you may want to make some important decisions about things like your finances or Will, and what sort of health and social care you’d like in the future. You may also want to choose someone you trust to handle your affairs. You may want to make a legal agreement, such as a Lasting Power of Attorney.

 

For more information and advice, you can contact the Office of the Public Guardian (England and Wales), the Office of Care and Protection (Northern Ireland) or the Office of the Public Guardian (Scotland). Contact details are listed at the end of this information sheet.

 

Find out more: Parkinson’s UK has information available that can help you think about and put plans in place for the future. See our booklet Preparing for end of life: a practical guide

 

 

 

 

 

 

 

 

 

 

 

 

Caring for someone with dementia

 

“My wife’s clarity of mind can vary drastically. But when she has a good spell, these times are of great value to me.” David, a carer

 

If someone becomes less able because of their dementia, it might be necessary for their family or friends to start helping with things such as shopping, housework or cooking. If this is the case, the person with dementia may be able to apply for Attendance Allowance or Disability Living Allowance, which will help provide some financial support.

 

Find out more: see our information sheets Attendance Allowance and Disability Living Allowance.

 

If you are in a position where you are dedicating a lot of time caring for a loved one, you may be able to claim Carer’s Allowance.

 

Find out more: see our information sheet Carer’s Allowance and our booklet The Carer’s guide.

 

Accessing local support services

It might be useful to consider support services such as day care, respite and home care. If you’re caring for someone with dementia, these services can give you a chance to have time to yourself. 

 

Parkinson’s UK information and support workers can help you access local support services. Go to parkinsons.org.uk/isw or contact the helpline for more details about information and support workers in your area.

 

Local groups

Parkinson’s UK has local groups that can offer invaluable support to anyone affected by Parkinson’s and dementia. Go to parkinsons.org.uk/localgroups or contact the helpline for more details.

 

The Alzheimer’s Society has local branches that offer support to everyone affected by dementia. These groups often provide various activities for people with dementia and also run carers’ groups, which can help you meet other people in similar circumstances. See the more information and support section for contact details.

 

 

Practical advice

If you are caring for someone with dementia, there are some practical things you can do that can help reduce their agitation or confusion and make life a bit easier:

 

• Keep to a daily routine as much as you can to help them remember when certain things like meal times will happen.
• Try to use familiar objects and phrases.
• Avoid unfamiliar environments – these can be quite stressful.
• Encourage someone with dementia to keep engaging and interacting with people. Hobbies are also a great way to keep memory and thinking as active as possible.

 

 

 

Helping with communication

The following information has been provided by the Alzheimer’s Society.⁹ You can find this and more helpful advice on the Alzheimer’s Society website. Visit www.alzheimers.org.uk

 

Difficulties with communication can be upsetting and frustrating for the person with dementia and for those around them. But there are some basic things you can do to make life a little bit easier.

 

• Listen carefully to what a person with dementia says.
• Make sure you have their full attention before you speak.
• Pay attention to body language.
• Speak clearly.
• Consider whether any other factors are affecting their communication.
• Use physical contact to reassure the person.
• Show respect and keep in mind they have the same feelings and needs as they had before developing dementia.

 

Listening skills

• Try to listen carefully to what they are saying, and give them plenty of encouragement.
• If a person with dementia has difficulty finding the right word or finishing a sentence, ask them to explain in a different way. Listen out for clues.
• If you find their speech hard to understand, use what you know about them to interpret what they might be trying to say. But always check back with them to see if you are right − it's infuriating to have your sentence finished incorrectly by someone else.
• If someone is feeling sad, let them express their feelings without trying to 'jolly them along'. Sometimes the best thing to do is to just listen, and show that you care.

 

Attracting the person's attention

• Try to catch and hold their attention before you start to communicate.
• Make sure they can see you clearly.
• Make eye contact. This will help them focus on you.
• Try to minimise competing noises, such as the radio, TV, or other people's conversation.

 

Using body language

• Someone with dementia will read your body language. Agitated movements or a tense facial expression may upset them, and can make communication more difficult.
• Be calm and still while you communicate. This shows them that you are giving them your full attention, and that you have time for them.
• Never stand over someone to communicate – it can feel intimidating. Instead, drop below their eye level. This will help them feel more in control of the situation.
• Standing too close to someone can also feel intimidating, so always respect their personal space.
• If someone is struggling to speak, pick up cues from their body language. The expression on their face, and the way they hold themselves and move about, can give you clear signals about how they are feeling.

Speaking clearly

• As the dementia progresses, people will become less able to start a conversation, so you may have to start taking the initiative.
• Speak clearly and calmly. Avoid speaking sharply or raising your voice, as this may distress them even if they can't follow the sense of your words.
• Use simple, short sentences.
• Processing information will take someone longer than it used to, so allow enough time. If you try to hurry them, they may feel pressured.
• People with dementia can become frustrated if they can't find the answer to questions, and they may respond with irritation or even aggression. If you have to, ask questions one at a time, and phrase them in a way that allows for a 'yes' or 'no' answer.
• Try not to ask the person to make complicated decisions. Too many choices can be confusing and frustrating.
• If the person doesn't understand what you are saying, try getting the message across in a different way rather than simply repeating the same thing.
• Humour can help to bring you closer together, and is a great pressure valve. Try to laugh together about misunderstandings and mistakes − it can help.

 

Whose reality?

• As dementia progresses, fact and fantasy can become confused. If someone says something you know isn't true, try to find ways around the situation rather than responding with a flat contradiction.
• Always avoid making the person with dementia feel foolish in front of other people.

 

Physical contact

• Even when conversation becomes more difficult, being warm or affectionate can help carers to remain close to their loved ones, or for the person with dementia to feel supported.
• Communicate your care and affection by the tone of your voice and the touch of your hand.
• Don't underestimate the reassurance you can give by holding or patting their hand or putting your arm around them, if it feels right.

 

Show respect

• Make sure no one speaks down to the person with dementia or treats them like a child, even if they don't seem to understand what people say. No one likes being patronised.
• Try to include a person with dementia in conversations with others. You may find this easier if you adapt the way you say things slightly. Being included in social groups can help a person with dementia to keep their sense of identity. It also helps to protect them from feeling excluded or isolated.
• If you are getting little response from someone with dementia, it can be very tempting to speak about them as if they weren't there. But disregarding them in this way can make them feel very cut off, frustrated and sad.

 

Other causes of communication difficulty

It is important to bear in mind that communication can be affected by other factors in addition to dementia − for example:

• pain, discomfort, illness or the side-effects of medication. If you suspect this might be happening, talk to the person's GP at once
• problems with sight, hearing or ill-fitting dentures. Make sure the person's glasses are the correct prescription, that their hearing aids are working properly, and that their dentures fit well and are comfortable.
• Parkinson’s symptoms can cause difficulties with communication.

 

Find out more: see our information sheet Communication.

 

 

More information and support

 

Parkinson’s nurses

Parkinson’s nurses provide expert advice and support to people with Parkinson’s and those who care for them. They can also act as a liaison between other health and social care professionals to make sure your needs are met.

 

Parkinson’s nurses may not be available in every area, but your GP or specialist can give you more details on local services.

 

Information and support workers Our information and support workers can also provide details and links to local services. They provide support for anyone affected by Parkinson’s.

 

For details of the local information and support worker in your area, contact our helpline on 0808 800 0303 or email hello@parkinsons.org.uk. You can also find out more on our website at parkinsons.org.uk/isw

 

Our helpline

Contact our free confidential helpline for general advice and information. Call 0808 800 0303 (calls are free from UK landlines and most mobile networks) or email hello@parkinsons.org.uk

 

Local groups

Support is available through Parkinson’s UK local groups. Visit parkinsons.org.uk/localtoyou or call our helpline for details of your nearest meeting.

 

Online forum

Speak to others in a similar situation through our online discussion forum at parkinsons.org.uk/forum

 

The Alzheimer’s Society
can provide information, advice and support for people with dementia and their families.
020 7423 3500
enquiries@alzheimers.org.uk
www.alzheimers.org.uk

 

 

Alzheimer Scotland

is the leading dementia organisation in Scotland.
0808 808 3000
alzheimer@alzscot.org

www.alzscot.org

 

Office of the Public Guardian (England and Wales) 0300 456 0300
customerservices@publicguardian.gsi.gov.uk

www.direct.gov.uk/mentalcapacity

 

Office of Care and Protection (Northern Ireland)

028 9072 4733

officeofcare&protection@courtsni.gov.uk

www.courtsni.gov.uk

 

Office of the Public Guardian (Scotland)

01324 678300
opg@scotcourts.gov.uk

www.publicguardian-scotland.gov.uk

 

Carers UK 0808 808 7777 (advice line)
adviceline@carersuk.org
www.carersuk.org

 

 

 

 

 

 

 

 

 

 

 

 

Five lifestyle changes 'could reduce dementia risk'

Taken From the News today

Five lifestyle changes 'could reduce dementia risk'

A jog, a Mediterranean diet, and learning a new hobby are among the top five tips to stave off dementia - but one in five Britons think there is nothing they can do

Experts said eating a 'Mediterranean diet' was one way to reduce the risk of dementia.  Photo: Alamy

     

         

One in five people do not think it is possible to reduce their risk of dementia, despite growing evidence that the condition is linked to lifestyles, a survey has found.

Research suggests one in three cases of the condition could be prevented by increased activity levels, a reduction in smoking and tackling health problems such as obesity and diabetes.

Last month a landmark study by Cambridge University suggested that just one hour’s exercise a week can reduce the chance of Alzheimer’s disease by almost half.

But a YouGov poll of more than 2,000 people by the Alzheimer’s Society published has found 22 per cent of people did not think it was possible to reduce their risk of dementia.

The charity said “five simple changes” to the average lifestyle could make a significant difference, with regular exercise highlighted as the most important factor.

In addition, experts said not smoking, eating a “Mediterranean diet”, preventing or controlling other health problems, and regularly challenging the brain were key to reducing the risk of dementia. 

In July a study published in the Lancet Neurology - the first to quantify the combined impact of lifestyle factors influencing dementia – identified exercise as the most significant protection against the condition.

Those who did not achieve three 20-minute bursts of vigorous exercise per week, such as jogging or football, or five 30-minute sessions of moderate activity, such as walking were 82 per cent more likely to go on to develop dementia.

Obesity in mid-life increased the risks of conditions such as Alzheimer’s disease by 60 per cent, while high blood pressure raised the threat by 61 per cent, the analysis found.
The Alzheimer’s Society said eating the right foods was important, recommending a “Mediterranean diet” with plenty of fruit and vegetables, fish, olive oil and nuts, a little red wine and not much meat or dairy.
Scientists also believe that challenging the brain regularly – for example taking up a new hobby, learning a language or even walking an unfamiliar route – may help to stave off dementia.
The charity said that there is no evidence that the brain is preserved by puzzles and crosswords, but said learning new skills and navigating new problems or geographical areas appears to have an impact on dementia.

Smoking, which damages blood vessels and the amount of blood reaching the brain, significantly increases the risk of developing the condition.

Other health problems, such as type 2 diabetes and high blood pressure also increase dementia risks.
The charity urged those at risk of either condition to undergo checks and follow medical advice.
Dr Clare Walton from the Alzheimer’s Society said: “800,000 people in the UK have a form of dementia but with no cure yet, we need a significant public health effort to attempt to reduce the number of future cases of the condition.

“We know that what is good for your heart is good for your head and there are simple things you can start doing now to reduce your risk of developing dementia. Regular exercise is a good place to start as well as avoiding smoking and eating a Mediterranean diet.

‘It is never too early to start making healthier choices that could help your memory - whether that’s hitting the gym or just walking instead of catching the bus, it all helps.”


Five tips to reduce the risk of developing dementia, from the Alzheimer’s Society:


• Exercise - There’s more evidence that regular exercise will prevent dementia than for any other measure we might take. Scientists don’t know why exactly, but it is possibly because it reduces blood pressure, controls cholesterol, improves blood vessel health and keeps weight down.

• Eat Mediterranean food - Eat plenty of fruit and vegetables, fish, olive oil and nuts, a little red wine and not much meat or dairy. “We don’t know which factor is most important here,” says Dr Clare Walton, from the charity, “whether it’s the fruit and veg, the omega-3s from the oily fish, the low sugar, the tannins from the red wine or the fact that you get your fat from olive oil, fish and nuts rather than dairy and red meat.”


• Manage other health conditions – Other conditions like type 2 diabetes and high blood pressure both increase your risk of developing dementia, so get these checked and follow medical advice to keep them under control.

• Avoid smoking - We all know smoking is extremely harmful and here’s yet another reason to quit - it significantly increases your risk of developing dementia, most likely because it damages blood vessels and reduces the amount of blood that reaches your brain.

• Use it or lose it – The philosophy that you should use your brain to preserve it by doing lots of puzzles, crosswords and reading has gained huge popularity in the past few years but the evidence that crosswords or Sudoku prevent dementia just isn’t there. Scientists believe that frequently challenging your brain with new things is the key, for example taking up a new hobby, learning a language or even walking an unfamiliar route.

Driving and Neurological illnesses like dementia

Never a day goes by when something is not said about people with some form of neurological illness, such as dementia and driving.

It's a well known fact that once you are diagnosed with dementia etc, you have to notify the Driving authority, yet surely this should be down to the doctors or the specialist as they are responsible for your care.

Failure to notify the authorities and insurance company that you have these illnesses, could cancel out your insurance and you could end up in court. 

To me it's wrong because if a doctor or specialist does not tell me to notify someone, to stop driving after a diagnosis and that leads to an accident, we can in law I believe sue them, for not informing them of the consequences. These people are hiding behind patient confidentiality red tape, and now its gone too far.

Its not just driving safely in your view, but can your eyes keep focused on what is happening in front of you at all times.

I say this because as many have found out, its the brain which dictates what happens and if the brain does not pick up the correct signals from the eyes, you are in trouble.

I gave up driving on my own because I felt unsafe and was unsure about the official view, but that was before my diagnosis and medication.

Since getting the medication I have started driving again but, I get assessed every year by my consultant, and then the forms are sent off to the driving authority.

I never drive on my own and never get behind the wheel of the car if I don't feel right, and will never drive with children in the car, as that is a risk I cannot afford to take

In many ways my licence is a waste of time because I rarely drive these days, and to be honest it does not bother me at all.

But I do think that we are in the minority, because there are many drivers on the roads these days, who should be stopped as they are clearly dangerous.

I often wonder how many elderly people are assessed for eyesight problems or reactions to speed, very few I would imagine simply because the doctors do not think it's their role to insist in this.

Nearly every time I see my doctor, he asks about things like whether I am still driving, about my eyesight etc, even though he knows that I will never get in the car to drive it on my own, and will never drive if I don't feel up to it.

I just do not wish to kill or hurt anyone, because I could never live with that on my mind.

These days we see and hear of many youngsters starting to drive at an early age, and then some get them selves killed because they simply cannot handle the car, sadly these people usually end up killing others too.

People wanting to ride motorbikes have to start with a small moped, and work up to the powerful bikes, so why not do the same with cars. I do not understand why youngsters can pass a driving test and then start driving a high speed car.

I personally think that the laws in this country need to be tightened up, to stop youngsters getting into fast cars, until they have experience in all types of driving.

I heard some time ago that if we were in a road accident as a driver, and the other insurance company found out that we had dementia, we would get the blame, whether it was our fault or not, yet people still drive around with mobile phones clamped to their ears, and get away with bad driving on a daily basis, something to me which is very wrong.

These days I do feel that everyone should have a mandatory driving test every ten or twenty years to ensure that they are safe to drive, and that's not just people like us with neurological illnesses.

But like it or not, I sometimes think we are victims of our own illness another form of stigma.

I know my days of driving are coming to an end, but that's because I am using my common sense and understanding that things are getting to the stage where, I cannot do it for much more.

But others carry on these days even though they cannot see, or cannot see the obvious, that they are becoming dangerous not just to themselves but also to others,

I started driving back in 1968 and have driven all over, on holiday and at work, and in all  honestly say that I enjoyed it.

I had a very strict driving instructor who did not hold back if I made a mistake, and a very hard driving test, but that was in the days before these pass and go in a months or week driving schools came out.

I personally think these places have allowed driving standards to get worse, but that's my opinion.

I also learnt to drive in snow and icy conditions, something that many cannot do these  days, and this causes accidents and traffic jams. I find it amazing that people driving four wheeled vehicles, get stuck in snow, simply because they are not taught to drive properly. "its not the car its the driver"   

But these days there are far too many idiots on the roads, and I am not talking about those with neurological illnesses, but many are people in the 18-50 year age bracket, who leave things too late, and just want to get in the car and drive like maniacs. 

It's the Jeremy Clarkson attitude, and this has made life harder. 

There are also many elderly people driving these days, when it's fairly clear that they should have stopped many years ago, but it's that little word pride which keeps coming up.

Sometimes our pride is bigger than the person. 

A car and driving is not the end of the world, if you are diagnosed with dementia etc, then give up when you are told or when you know that things are not right, and don't fight it, it really is not worth it, but remember the good times.

Remember that its always better to stop early yourself, before you are forced to stop by others, and before you injure others.

If you think that a person is becoming too dangerous to drive, seek advice on how to approach this problem, do not jump in with both feet demanding that they stop there and then

I honestly think that it takes courage to stop driving before its too late, and not everyone can do this, but with the correct support it can be handled carefully
  

I really hope that one of these days the medical profession will sort it's self out, and tell, people when they should stop driving, and also do the right thing tell the authorities themselves instead of sitting on the shelf letting others do their job for them.

Very bad night

Last night was horrible and i ended up having to get up and sit up for a while. I don't know of t was because I got tired yesterday, and had a terrible day with my hip, or if it was just pure coincidence. I hate nights like this because I hate trying to sleep again, as these things sometimes start all over again.

I am on medication to help me sleep but it failed last night, but I cannot complain as I have had a few comfortable nights since starting the medication  

Police SMASH into dementia sufferer's car after he drives WRONG WAY down M6 Toll

From the news press

Police SMASH into dementia sufferer's car after he drives WRONG WAY down M6 Toll

TRAFFIC police were forced to smash into a dementia sufferer's car after he was caught travelling at 50mph down the WRONG way of a motorway.           

A driver with dementia was caught travelling the wrong way down the M6 [GETTY]

Officers were called to the M6 toll in the West Midlands at around 9:50pm yesterday after reports flooded in to say a Honda Jazz was heading south on the northbound carriageway, between junction T5 and T4


They were forced to take drastic action by crashing into the side of the car to get it to stop.
Afterwards officers discovered that the driver was a 77-year-old man with dementia who had been reported missing by his family.


Inspector Mark Watkins, from the Central Motorway Police Group, said that officers only smash into cars if there is a significant threat to other road users.


"It's a recognised pursuit tactic in order to bring incidents to a conclusion, and is only used if there's a risk to life," he said.

This was an extremely unusual situation where the driver of the car had shown no intention to stop travelling in the wrong direction

Inspector Mark Watkins

"That forced the car to stop, and it came to a halt in lane three."


The toll road where the crash took place was closed momentarily to clear the debris.


The driver was checked over after the incident and was returned home to his family in Rowley Regis, West Midlands, unharmed while one officer suffered a minor injury.
Inspector Watkins praised the entire team of officers for their brave actions.
He said: "This was an extremely unusual situation where the driver of the car had shown no intention to stop travelling in the wrong direction.
"Traffic officers bravely took the decision to engineer a collision with the vehicle and I am sure that their selfless actions have prevented serious injury or worse to the driver and other motorists on the road.
"We were relieved that we could bring this situation to a safe conclusion and return the man home safe and well to his family."

CAMPAIGN: Let’s make Harrogate a dementia-friendly community

Its wonderful news to see another very well known town wanting to become Dementia Friendly.

Let us hope that others follow

CAMPAIGN: Let’s make Harrogate a dementia-friendly community

Service users at Dementia Forward who would benefit from Harrogate's bid to become dementia friendly.

        

There are around 3,000 people with a diagnosis of dementia living in the Harrogate district. With two thirds of those people trying to lead a normal life in the community, the Harrogate Advertiser Series campaign to make Harrogate one of the most dementia-friendly communities will have a lasting impact on many people. JAMES METCALF reports.



Dementia is a condition caused by diseases of the brain and is a physical illness, not just a part of growing old, and one in three people over 65 will get it.


This fact, often misunderstood, is a central part of the education being offered to businesses, companies, and community groups by charity Dementia Forward when they launch their bid to transform Harrogate into a dementia-friendly community next month.


There are other startling facts in the training: people under 65 can also develop it, and over the age of 80 the chances of doing so are dramatically increased. Two thirds of people with dementia are women, and by 2021 - only seven years away - one million people are expected to have dementia in the UK.


CEO of Dementia Forward Jill Quinn said putting this information out there for people to properly digest will help them to understand what dementia is, and perhaps how they can help those affected.

“People hear the word dementia and are scared, but they wouldn’t be if they knew more about it,” she said.


“When we go into a hospital we’re not going in to train nurses, we are going in to train the people who get overlooked. The porters, the volunteers, the chaplain, and the carpark attendant.
“For people to gain access properly in any place we need that education out there. It is a culture shift, and like a social movement it doesn’t happen over night, but there is an urgency to this.”


When people take on the training, which seven businesses in Harrogate have already completed, in a pilot scheme, they look at what it might feel like to have dementia and how best to communicate, that carers may also need support, and the training focuses on busting the myths associated with dementia. For instance, a person may be physically fit despite the disease but can no longer take part in the hobbies that formed an essential part of their life up to that point. This, then, means the disease also affects a person’s identity, and that can be hard to bear.

Mrs Quinn said: “You could be a great golfer and that can remain, but you can’t do that anymore because you can no longer drive, or you might not find you way, or might do the holes in the wrong order, but that doesn’t affect your shot.


“So if you have the right person supporting you can still golf if that’s what makes you tick. We mustn’t write people off.”


The much hoped for outcome of this education roll-out, which will follow a launch event on September 22 at Holiday Inn Harrogate when other businesses are invited to attend, is to introduce changes in society that will enable people to continue their normal lives with the help of a community that not only sympathises but knows how to help.


Mrs Quinn added: “I don’t think people spend much time thinking about what it is, because it is actually a loss of identity, and as human beings that is so important and you lose it because you can no longer do the things that make you tick. It isn’t until you get your head round that that you can truly be empathetic.


“The message for somebody like a policeman, for instance, is that if they understand it as the illness that it is, which is invisible, and if they understand what is going on, their empathy is increased and the way they deal with that person will be different.


“So it was about changing their approach in the way they would talk to people because questioning can make them retreat into themselves. If people are not supported directly they shrink, but if they get the right support they will retain their life and identity for longer.”


Once they have completed the education, businesses will be given a sticker they can put in their window and use on their paperwork, and as the campaign spreads it is hoped that people with dementia will recognise that symbol as a safe place where help is at hand, but also that others will want to find out more.


They can then join Dementia Action Alliance - a national movement that lists all dementia-friendly companies by locality.


Mrs Quinn said: “We have a Harrogate page sat there waiting now for its members to join and they will become part of a network for as long as it takes to embed it in enough so it doesn’t get forgotten.” Once a network is established the important work of making changes will have already begun. Though still in its early days, the lasting impact of this will quite literally change lives.
Mrs Quinn added: “When we made entrances wider for wheelchair users and put ramps in place it must have seemed hard, but now we look back and it seems obvious that we should have done that. That is what we need to do with dementia.
“When we talk to people about their illness I swear they stay better for longer, I swear they do.
“It has been quite a journey, because it has been two years that we have been banging on about it, but now it is working.”


BUSINESS VIEWPOINT


There are already businesses doing a great deal in the district to support people living with dementia.
This includes Over the Rainbow Care - a business currently working to set up dementia day centres in Knaresborough, Ripon, Wetherby, and Harrogate from the end of next month.


Run by Megan Sweeting and her business partner Natalie Dobson, these centres will include a range of pre-planned activities designed not only to provide a purpose-built environment for people with the condition but also to give a break to their carers.


Miss Sweeting said: “What is most important to me is trying to allow people to be as independent as possible for as long as possible, and I work in the community with people still living at home to ensure they have a good quality of life.


“What we are trying to do is create a good environment of respite for carers as well, so they know their relatives or friends are somewhere safe and participating in meaningful activities, but so they can also have a break.


“There will be a range of activities on offer, including lots of sing-a-longs and reminiscence activities, arts and quizzes, because that is mentally stimulating and can really help.


“We will be allowing up to 14 people into the service at one time, so it is quite intimate and we can tailor the activities.” Though the company will charge for the activities, the money will go back into the business, which hopes to get a minibus to do day trips.

Charity beer festival helps dementia sufferers

Charity beer festival helps dementia sufferers

                     

Event boosts funds(9469627)

A BEER festival held in Chester-le-Street raised almost £850 for a charity that helps people with dementia.


The Alzheimer’s Society County Durham’s fundraising volunteers staged a daytime beer tasting followed by an evening festival at Chester-le-Street Cricket Club’s clubhouse in Mains Park Road earlier this month.


The event, which followed a successful wine tasting held by the charity last year, featured beers made by smaller brewers in and around the North-East.


Charity volunteer Anthea Cordner said: “We decided we wanted to do a fundraising evening with a difference, and after the huge success of our wine tasting last summer, we thought this would be a great way to raise vital funds for the Alzheimer’s Society.


“It’s great that, as a group, we are building on the success of our past events to raise funds to help support people to live well with dementia and to fund research to one day find a cure for dementia.”
Alzheimer's Society’s Community Fundraiser Rebecca Scott, who organized the event, said: “It’s great that our County Durham volunteer group are giving their time to support Alzheimer’s Society.
“There are over 35,000 people living with dementia in the North-East but dementia is more than just memory loss; it robs people of their lives and has a devastating impact on families and loved ones.

“We rely on the generosity of supporters and volunteers like this group, to help us continue our vital work so that Alzheimer's Society can continue leading the fight against dementia.”


For more information about the charity’s work and its fund-raising efforts in County Durham call its area office in Chester-le-Street on 0191-389-0400.