Dementia Carers…have your say on future services

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

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

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

It is important that dementia carers are strongly represented, so taking the time to complete the questionnaire will be time well spent.

Alistair Burt, Minister of State for Communities and Social Care and Lead Minister for carers across Government, launches this listening exercise in the short video below and explains why consulting the full range of carer groups is so important for shaping future policy.

Have your say!

Click on the link here to the Department of Health's website to take part in the Carers' Survey ​

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

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

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

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

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

Research your destination

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

Consider a trip down memory lane

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

Remember you don't need to travel far

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

Plan meals carefully in advance

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

Stay within the comfort zone

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

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

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

Tiffany Smith 
Helping Hands dementia specialist

Helping Hands is a long established, national home care provider that enables people to stay in their own home and live as independently as possible, by providing live-in care or hourly visits. Visit their website which provides helpful advice and a dementia toolkit, by clicking the link here -


5 Ideas for Fathers Day for families affected by dementia

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

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

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

Plan family meals carefully

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

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

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

Organise activities at home

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

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

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

Choose activities that involve everyone

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

Create a playlist of favourite music

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

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

Stay within your Dad’s comfort zone

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

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

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

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

First published

Local success in slashing dementia clinic waiting list

DEMENTIA clinic waiting times have dramatically reduced to two months after a major review into mental health services in the area.

Patients waiting for an appointment at the Victoria Centre-based Memory Services clinic, run by Avon and Wiltshire Mental Health Partnership NHS Trust (AWP), had been forced to endure a nine month waiting list before the strategic review.

In the last two months, waiting list times have been slashed bringing welcome Christmas news for the 29 people currently on the list who now have appointments scheduled for early next year.

Staff from the the Swindon Memory service pictured outside the Victoria Centre at the Great Western Hospital. The Swindon service has recently slashed its waiting list time from nine months to two. Photo: Stuart Harrison

In another positive outcome for the trust, people with severe mental health conditions are now able to be treated in the local area. Previously they had been sent as far afield as London and York to receive specialist care.

Newlands Anning, Interim Managing Director at AWP said the initiative to reduce waiting times was a result of staff being moved around and the appointment of a new consultant psychiatrist.

“A complete assessment reviewed the medical input in the memory services centre and a medical assessment reduced the delay,” he said

“Resource has been moved around, and a consultant psychiatrist brought in to speed up appointment times.

AWP had increased its dementia diagnosis rate by 28 percent in the space of four months, placing it among the top four trusts in the country.

But as rates increased waiting times for appointments at their Victoria Centre-based Memory Services clinic had risen.

In January 2013 NHS Swindon pledged to cut waiting times for appointments at memory clinics. But almost three years later patients were still facing waits of nine months to see dementia specialists.

“We took all of that feedback on board, took it as a priority and invested and utilised all of our resources and it is really because of that that we have proved successful,” Newlands said, and added that the trust was now on course to hit a target of four weeks by March 2016.

“It looks positive, things are moving in the right direction and our projections are we will be hitting four weeks within three months," he said.

“The patient feedback has been incredible, people have been surprised. We’re dedicated to providing the best service locally as possible, despite financial constraints that trusts across the country are facing.

"All the teams across Swindon have worked phenomenally hard to focus on the pressures of accessing mental health services and improving patient flow. I am very proud of what has been achieved and that we now offer a much improved patient experience."

Source: This is 20/12/15

#sharetheorange says Christopher Eccleston

"What on earth do oranges have to do with Alzheimer's?....." was my initial thought when I came across this video clip.
But I have to admit it caught my attention. And to that purpose, it's doing its job nicely.

Alzheimer's Research UK are out to tackle head-on the myth that dementia is just a normal part of ageing, and instead increase public understanding that dementia is caused by physical diseases that, with greater research, can be tackled and perhaps eventually cured.

To get their message across in the clearest, most thought provoking way, they've teamed up with award-winning actor, Christopher Eccleston, along with Aardman Animation (the makers of Wallace and Gromit), and creative agency ais London to create this 90 second film.

The film was launched last week on Facebook, as part of a new digital campaign by the charity, with people being urged to #sharetheorange.

“Animation is a great way of communicating difficult messages, delivering them in an easily understandable and memorable way', says Heather Wright, Executive Producer at Aardman. "Using the orange as a metaphor for the brain makes this film very strong because the idea and the execution work perfectly together.”

The hope is that by making the condition easier to understand, the public will get behind the campaign to find a cure within our lifetime, in much the same way people have rallied to the support of Cancer , Heart disease, and AIDS charities in recent years.

Christopher Eccleston, whose father died following a 14 year battle with vascular dementia, and is a staunch supporter of the charity stresses...

Christopher Eccleston

“We have to think differently about dementia. We have to stop believing dementia is an inevitability; something that simply happens to us all as we grow older. If we don’t, we’re never going to truly fight it.

“Dementia is caused by diseases and diseases can be beaten. We’ve tamed diseases like cancer and heart disease and a diagnosis of either is no longer a certain death sentence. People with dementia deserve this same hope. This film aims to show that dementia is caused by physical processes that scientists can put a stop to.

“While scientists fight dementia in the lab, by sharing the film anyone can fight the misunderstanding and fatalism that surrounds dementia in our society.”

Swindon resident becomes champion of Alzheimer’s Research UK

A CHAMPION has been crowned in Swindon for her dedication to a national charity and fundraising exploits.

Amanda Franks, 41, was made a champion of Alzheimer’s Research UK last month following years of stoic support for the charity’s cause as a fundraiser and spokeswoman.

Her mum, Cathy Davidson, has been living with early-onset Alzheimer’s for seven years and was only 58 when she received the diagnosis.

As a champion, Amanda joins a small but growing group of 35 people nationwide who have made outstanding efforts to help Alzheimer’s Research UK in its mission to defeat dementia.

“It’s a case I’m absolutely passionate about and do an awful lot of awareness and fundraising for,” she said.

“It’s nice to get the recognition you’re doing something good.”

Amanda Franks 

The director of Frankly Recruitment in Kembrey Park said it was never something she had considered in just supporting the charity, but the penny dropped when she went away on a charity-organised course for spokesperson training.

She found, on a course with more than a dozen others, she was the only attendee not classed as a champion of the charity.

Over the past 18 months, Amanda has raised over £15,000 for the charity.

To achieve this she has enlisted the help of family and friends to organise numerous fundraising activities, including a live concert in 2014, The Gig to Remember, held at the Oasis in Swindon.

The concert featured world renowned Beatles tribute band the Bootleg Beetles and was attended by over 1,300 people.

Amanda has also shared her story with the media to help increase public understanding of Alzheimer’s disease and the impact it can have on individuals and their families.

“When you have somebody in your family with Alzheimer’s it’s so out of your control, there is nothing you can do to make it better,” she said.

“This was my way of making a difference. The future is in your own hands with your own life, but it is difficult with this disease.”

Jodie Vaughan, community fundraising manager at Alzheimer’s Research UK, said: “We greatly appreciate Amanda’s hard work, dedication and enduring support for the charity and we are delighted to make her a champion of Alzheimer’s Research UK.

“Her motivation for raising money and awareness of our work is unwavering.

“Her efforts to help in this way are bringing our scientists ever closer to finding better forms of diagnosis, preventions, new treatments and an eventual cure for Alzheimer’s disease and other forms of dementia.

“There are 850,000 people in the UK living with dementia today, including nearly 7,000 people in Wiltshire.

“Research has the power to defeat dementia and Alzheimer’s Research UK is leading the charge.

“We rely on public donations to fund our crucial research and it’s thanks to the commitment of people like Amanda that we are able to increase the profile of dementia research and continue our vital

Article by Beren Cross. Republished from 13/11/15

Actress Phyllida Law highlights the strain on families caring for a loved one with dementia

Phyllida Law, mother of actresses Emma and Sophie Thompson, has described the burden of caring for a parent stricken by dementia.

The 83-year-old, whose extensive roll-call includes appearances in the 1993 film version of Much Ado about Nothing and more recently as a guest star in Foyle's War, looked after her mother, Meg, for several years as the degenerative disease took hold.

In a case study for a new report from Alzheimer's Research UK, which focuses on the impact of dementia on the people who care for those with the disease, Phyllida describes the strain that caring for her Mother Meg put on her as her mother's health deteriorated.

The Alzheimer's Research UK report, "Dementia in the Family: The impact on carers", comes as new polling reveals that nearly a third (31%) of non-retired people aged 55 and over are worried that their family members will have to care for them in later life.

The report reveals how those looking after family members with dementia can become socially isolated and can find it difficult to cope.

Through interviews with four families who are living with the condition, the report explores the stress and cost faced by carers, revealing how those looking after family members with dementia can become socially isolated.

Hilary Evans, chief executive of Alzheimer's Research UK, said: "For many people the festive season is a time to think about family, but for countless families across the UK dementia is taking a heavy toll, leaving people socially isolated and struggling financially.

"The experiences highlighted in this report will be recognised by people up and down the country who are dealing with the challenges of caring for a loved one with dementia."

If we could delay the onset of dementia by five years, by 2050 we could reduce the number of carers by a third. 

“A diagnosis of dementia ripples far beyond the person affected, it touches whole families, and we owe it to them to do all we can to tackle it.”

Read the full report by clicking on the link here to Alzheimer's Research UK website:

Dementia in the family : The impact on carers​

Article courtesy of Local Dementia Guide

Tips for managing Christmas with someone in the later stages of dementia

Christmas is traditionally a time for getting together with family and friends. But if one of your guests, or someone you live with, is in the advanced stages of dementia, the change of routine that comes with getting together with other people can be fraught with difficulties, leaving you tense and anxious.

Dementia alters people's perceptions which is likely to make it difficult to do things and celebrate in the way you have in the past. This does not mean you have to scrap your plans for Christmas altogether though.

Maizie Mears-Owen, Head of Dementia Services at Care UK, suggests some simple ideas that can make a big difference and help the whole family enjoy the Christmas festivities.

Forward Planning

"Begin to prepare them in advance by talking about who will be there, and who those people are to them - niece, grandson, friend. Photographs are very useful for this as it will help them to recognise faces."

Photographs can also be useful because people with dementia may be living in a different decade. It is common for people to believe they are at a younger point in their lives. If this is the case, use older photos to explain who people are - and don't get upset if your relative gets names wrong.

Muddling might happen

"If your mother calls you 'mum', do not get embarrassed and do not correct her - she is just at the point in her mind where you are her mother's age, or she sees something in you that reminds her of her mum," says Mears-Owen.

"Embrace it. Be 'Mum'. Help her with her food and with opening her presents - she will find it reassuring and calming. Contradicting her will make her feel agitated and confused."

Young children seem to take it all in their stride. However, teenagers can find it upsetting. "Not being recognised or seeing out-of-character behaviour can sometimes be confusing, embarrassing and hurtful," adds Mears-Owen.

She suggests talking the issue over together as a family before Christmas, and also recommends Matthew Snyman's book The Dementia Diaries (available from Amazon), which follows four young people dealing with their grandparents' dementias.

Christmases Past

Christmas Eve is the time to start tapping into family traditions. Mears-Owen says: "If you prepare your vegetables on Christmas Eve night, encourage your loved one to take part. They will feel useful and it can start conversations about Christmases past. Reminiscence is vital to increasing wellbeing and something we do across our 114 care homes. Get them talking about their childhood Christmases as well as yours."

Dementia can take a toll on verbal communication skills. "Music is a great way to connect with someone, as well as being fun," says Mears-Owen. "Even if they cannot sing, they can enjoy tapping out a rhythm and joining in, so why not try a carol service or sing along with a CD?"

Make room for calm

Christmas mornings can be frenetic, especially if there are young children in the house. Set aside a quiet and comfortable place for your relative. "The hurly-burly of present opening, noisy toys and over-excited youngsters can prove too much for someone whose senses have changed," Mears-Owen explains.

"To avoid confusion and anxiety, offer your relative a cup of tea away from the chaos and, if they want it, sit with them and chat."

The festive feast

The centrepiece of Christmas is the family lunch. Ann Saunders, a Care UK operational director with a personal interest in nutrition in older people, says: "Dementia can take away depth perception and narrow the field of vision, so keep things fairly clear.

Hand out crackers when you are going to pull them, limit the amount of crockery and cutlery on the table and use a tablecloth that contrasts with the plates. White-on-white blends in and the person will not know where the plate ends and the cloth begins.

"I find a blue or bright yellow plate works best: the meal stands out as there is very little food in those colours. Do not use plates with patterns as these can cause optical illusions and confusion.

"Try not crowding the plate," she adds. "Appetites are small and lots of food adds to confusion. Keep the meat in one section of the plate, the carbs in another and the vegetables separate. It is attractive and clear.

"Taste buds age and older people often develop a sweet, sour or savoury tooth to compensate. Try adding lemon or lime for that extra zing, use plenty of fresh herbs and try adding a teaspoon of honey to the water you cook the carrots in. The most important thing is that everyone indulges in their favourite foodie treats throughout the day."

Remember, just because someone is living with dementia doesn't mean they can't join in the fun and indulgence with the rest of the family. A few simple changes can make a big difference and help everyone have a fulfilling Christmas celebration.

With thanks to Care UK. Article by Abi Jackson, first published on

Warning not to withdraw Donepezil too soon

Researchers from University College London (UCL) have brought into question the current practice of withdrawing use of the commonly prescribed drug Donepezil in the later stages of Alzheimer's disease.

In a recent trial following the progress of 295 people with moderate to severe Alzheimer's, it was found that discontinuing use of the drug in the advanced stages of the disease actually doubled the risk of the patient being placed in a nursing home within a year.

Donepezil is licensed for the symptomatic treatment of mild-to-moderate Alzheimer’s disease, and is usually withdrawn when a patient’s symptoms worsen due to a lack of perceived benefit in severe Alzheimer’s, and to save on NHS costs.

The research might now call this practice into question. 

Donepezil, which is available generically, can cost as little as £21.59 per year, whereas the average cost of residential care for people with dementia is in excess of £30,000 per year.

Professor Robert Howard, who led the study, has been careful not to overplay the research findings.

“We are not talking about a neuroscience breakthrough. We are not saying that the treatment is actually slowing down Alzheimer’s disease. The treatment is continuing to improve symptoms in a way that helps patients to maintain independence and it is doing it for longer and later into the illness.”

He added: “It’s a modest effect but it’s an important effect if it is your mother, wife or someone close to you.”

Click here to view a summary of the research published by The Lancet 26/10/15