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.”
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 http://www.thisiswiltshire.co.uk/ 13/11/15
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.
"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.
"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.
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?"
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 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."
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.”