Great Wall challenge will boost dementia fund

It’s so huge it’s visible from space and has been named as one of the ‘New 7 Wonders of the World.’

Now, two intrepid members of staff at Bradford Royal Infirmary, part of Bradford Teaching Hospitals NHS Foundation Trust, will see the mighty Great Wall of China first hand when they attempt to walk sections of it – and all in the name of charity.

Consultant Physician, Care of the Elderly, Eliz Brierley and Lead Nurse for Dementia, Danni Woods are now headed for an adventure of a lifetime which will see them trekking around 35 km (22 miles) along stretches of the famous structure, in order to raise money for the Trust’s Forget-Me-Not charity which supports patients with dementia.

The momentous challenge will take place in the run up to National Dementia Awareness Week, which runs from 14th-20th May.

The terrain and the altitude will certainly be taxing with sections such as Gubeikou, Jinshanling, Mutianyu and Juyongguan described as “tough” and “challenging.”

And as well as various steep ascents and descents, there will be hundreds of steps to conquer as the walkers aim to master dozens of watchtowers during their five-day trek!

Eliz said: “People may well be asking why we are doing this but it will be a terrific experience and at the end of the day we will be helping our patients with dementia so that’s our motivation. When Danni asked if I fancied taking on the challenge, I thought ‘why not?’ We are both fully funded so everything donated goes to the Forget-Me-Not fund.”

Danni added: “This is a fantastic charity and a really worthy cause, and with the money we raise, we will be able to provide materials and equipment which can make such a difference to patients.”

Some of the resources already benefiting patients include brightly-coloured crockery which can help with visual impairment, and revolutionary ‘My Life’ digital reminiscence units, which can help with anxiety. Eliz and Danni hope the money they raise can help to provide more of these helpful aids.

Between them they have now raised almost £5,000, smashing their original target of £3,000 thanks to generous sponsorship from colleagues, family and friends as well as a number of fund-raising local events including a beetle drive and supper, ceilidh, wine tasting, race night and treasure hunt.

“The ‘My Life’ units are invaluable because they can really help patients with cognitive impairment,” explained Eliz.

“By simply touching the screen, the software stimulates people with dementia to start lively discussions, debates, and telling of anecdotes of long-forgotten tales. Personal media items can also be uploaded, allowing families, carers and people with dementia to view images from the past or other relevant images. This ensures everyone can have a meaningful and personal experience.”

Danni, who is being funded by ‘MY Dementia Improvement Network Life’, added: “So far we have 20 units but we would like to provide more. These units plus the other equipment we are able to buy all help to create environments which support our patients who are experiencing dementia-related difficulties.

“Our priority is to maintain a person’s independence as far as possible and make people feel relaxed while at the same time, providing a stimulating environment which provokes conversation and engagement.”

To prepare for the momentous trek, both Danni and Eliz have been in training, which has included regular walks, swimming and visits to the gym!

“I think the variations in temperature and the terrain will really stretch us and there will be cultural challenges too,” said Eliz.

A culturally competent service

TACKLING DEMENTIA: Mohammed Rauf with the University of Bradford’s Professor in Dementia studies, Murna Downs

Call for targeted campaign to help BME groups with dementia

The Government’s stated aim is to make England the best country in the world for dementia care.

However, a University of Huddersfield researcher is finding that some minority ethnic groups are reluctant to take advantage of the support that is increasingly available.  He will make a call for specially-targeted campaigns aimed at these communities.

Tim Dlamini is in the later stages of his PhD project, examining end-of-life care for people with dementia, with a focus on black and minority ethnic (BME) groups.

He has conducted focus groups with elderly people in the early stages of the illness, and in-depth interviews with family members caring for a relative with dementia.  Tim himself was inspired to work and research in the field after the experience of helping care for his grandmother.

“Research has shown that there are differences in how dementia is viewed,” he said.  “In many BME communities, it is still seen as a natural part of ageing and not as an illness, so in many cases people do not access the services that are available.  Families are left to struggle and try to cope with the situation as best they can.”

“Most of the people who participated in the interviews spoke from a lived experience perspective and it appears there are some clear indications that many people dying from dementia may not be receiving personalised care at the end of their lives.  With no cure for dementia as we stand and a projected increase of dementia in the UK and beyond due to aging societies, it is very important that we focus on providing quality care that meet the needs of individuals with dementia and their families.”

Tim found that there is still an attitude prevalent among BME families that they are best equipped to care for relatives and this leads to reluctance to deal with services that might be seen as culturally insensitive.   

Having completed interviews with focus groups, Tim is now analysing his data, but says there is a case for a campaign on dementia awareness aimed at BME communities.

South Africa-born, he relocated to the UK in 2002, and helped care for grandmother Esther, long resident in the Basingstoke area.  The experience led him to work in dementia care which partly motivated him into research around dementia care.

He enrolled for a psychology degree at the University of Huddersfield and after completing it he was awarded a Vice-Chancellor’s Scholarship to move on to his PhD.

IMPORTANT RESEARCH: Tim Dlamni’s PHD is focusing on end-of-life care for people with dementia, with a focus on BME groups

Tim’s goal is to continue to work and research in the wider field of dementia care, which is burgeoning.  

More than one million people have trained to be Dementia Friends and over 400,000 NHS staff and more than 100,000 social care staff have also been trained to supporting people with dementia.  

Research spending has doubled and while he was still Prime Minister, David Cameron stated that: “By 2020, I want England to be the best country in the world for dementia care and support.”

Mohammed Rauf - who recently received an MBE for his outstanding work with the Meri Yaadain Dementia Team - believes that work needs to be done at both ends of the spectrum.

He said: “Our work tells us that minority ethnic communities are at various stages of their awareness of dementia.

“Some don’t even have an understanding of the term ‘dementia’; whilst others are beginning to see that this is something recognised culturally but as part of the natural ageing process.

“Meri Yaadain Dementia Team has been working at both ends of the spectrum - raising awareness and supporting carers to access appropriate service through informed choices, such as having access to the right information.

He believes dementia experts are starting to make inroads, as the needs of BME communities are starting to be listened to by policy makers and service planners.

“We need to recognise that we should be talking about the person with dementia as a ‘person living with dementia’ rather than to be ‘suffering’ with it.  

“The language associated with dementia can also act as a barrier for the individual or their family and carers to break the cycle of misconceptions and stigma.

“Whilst at an early stage with regards to my own PhD research, I am seeing that South Asian people with dementia are absent from mainstream services. South Asian people tend to present late for help and support and are still heavily influenced by family and communal stigma. 

“We cannot adopt a 'one size fits all approach' and we have to be aware that there are 'communities within communities’.”

“Food, diet, language, music and physical environment all play a role in having a culturally competent service, where staff are fully trained to understand differences as well as similarities across the different communities and cultural groups of people.”