In the Bristol Dementia Wellbeing Service we are keen to ensure that everyone has the opportunity to be involved in research.
Research studies can take a number of forms and may investigate different aspects of dementia from clinical trials of new medicines to finding out which care treatments work best. Research can be beneficial in a number of ways, including the potential to improve one's own condition, wellbeing or quality of life, the ability to access treatments which may not be widely available and the possibility of helping other people with dementia in the future.
Examples of being involved in research can include talking to researchers about a particular subject, completing a questionnaire or attending a health centre for tests. Even if you sign-up to be involved in research, you are under no obligation to be part of any specific study, and you are always given full information about how you will be involved and what will happen - you can always change your mind at any time.
If you are interested in taking part in research, please get in touch with Shaun Popel, our Assistant Research Practitioner on 0117 904 5150 who will be happy to talk to you.
A friendly and informal group for younger people with dementia (under 65). The group meets on the second Monday of each month 2pm - 4pm at
Bambalan, Podium Level, Colston Tower, Colston Avenue, Bristol, BS1 4XE
No referral required, but on your first visit to the group, please come along with a Navigator or Practitioner from the Dementia Wellbeing Service.
Cost: Free Of Charge
For further information please contact Sonya Pratt, Dementia Wellbeing Service 0117 9513410
My Life Films make free life story films for people living with dementia. Celebrating their favourite memories, bringing the focus back to the individual rather than their illness to improve person-centred care, and improving their quality of life. The South West London and St George's NHS Trust recently ran a pilot study to see how the films help people living with dementia in care homes, the following short video explains the positive impacts: https://vimeo.com/203289973
For further information about the charity please visit their website. Their criteria can be viewed here. You can download a flier about their service here.
We have now launched an innovative series of short films in six different languages giving information about dementia and relevant support services in the city. We commissioned the six short films - in Urdu, Punjabi, Cantonese, Somali, Polish and English-language - to address the stigma, misunderstanding and lack of accurate information currently available for the culturally diverse communities across the city.
There are an estimated 25,000 BME people with dementia in the UK. While the number of white, British people with dementia is expected to double by 2051, the numbers of people from BME communities is expected to increase sevenfold within the same timeframe.
Mrs Kwan, who is originally from China, has lived in Bristol with her husband for 45 years and raised their family here. She is now carer to her husband who has dementia. She explains: “Life changes significantly for someone with dementia, and for their carer and family too. It’s really important to get help. In our community, a lot of people don’t know what dementia is, we don’t even have a word for it. This means that lots of people with the disease run the risk of being forgotten.”
Within each of the films, medical experts, people affected by dementia and members of the relevant communities explain what dementia is, outline how people can gain a diagnosis and access the free support available from the Dementia Wellbeing Service.
This issue is echoed across many communities, as well as within white-British communities, and one which the films address head on.
Khadra Abdi, who cares for her mother with dementia and is active in the Somali community in Bristol says: “Many older people within our community have limited English language, and when they don’t understand what dementia is it can be very scary. These films explain about the disease and the help available in a simple, clear way, and most importantly in their native language, making it far easier for them to gain a genuine understanding of dementia, get a diagnosis from their GP and to get support from the Dementia Wellbeing Service”.
You can now view the films from our homepage or via our YouTube channel and hardcopies are available from 0117 904 5151
The Bristol Dementia Wellbeing Service took part as partner organisation in the research project “The Dementia Experiences of people from Caribbean, Chinese and South Asian communities in Bristol” overseen by University of West of England (UWE) which has just been published. UWE spoke to older people and their families from African-Caribbean, Chinese and South Asian communities in Bristol in order to find out about the experiences of people with dementia.
The service is currently considering the report’s recommendations and will continue to work in partnership with community groups across Bristol to ensure the service is responsive to the needs and challenges for people with dementia across different communities.
A copy of the report can be viewed here and the suplimentary information here.
You can also hear about the experiences of dementia of people from BME communities in this film.
Alzheimer's Society have updated their guides for both LGBT people living with dementia and for those supporting LGBT people with dementia.
If you are lesbian, gay, bisexual or trans and have dementia, these guides talk about the things you can do to remain independent, get the emotional and practical support that’s right for you, and plan for your future.
You may feel that lots of the information and advice you are given, or lots of the support available, isn’t right for you. You may have, or feel you have, different circumstances to heterosexual or cisgender people (someone whose gender identity is the same as the sex they were assigned at birth). This could be because of your experiences, your living arrangements, the support you receive and who you have around you.
Dementia is challenging for everyone, and everyone’s situation will affect what living with dementia is like for them. However, being LGBT and having dementia can present extra difficulties. It can also mean that living well with dementia means something different to you – something that you don’t hear talked about as much.
It’s important to know that you aren’t alone. Support and advice is available, there are services and care settings designed to support you, and the law protects your rights to equal treatment and privacy. By knowing your rights, finding the right support, and planning for your future, it is possible to live well with dementia.
Unfortunately many older people, especially those with dementia, are targets for criminal scams to defraud them of their money. Jessica's Story is a powerful account that highlights the financial and emotional impact this can have on people and their families. Scams can take a number of forms:
Online scams, including fake emails
What you can do
- Ensure you have good virus protection online
- Keep an eye out for any emails that seem ‘too good to be true’ – they are!
Bogus traders on your doorstep
What you can do
- You can put up a sign saying that uninvited callers are not welcome
- Keep your door locked with the chain on, and ask to see any caller’s ID cards and call their company to see if they are genuine. If you have any doubts, don’t let them in – it is your home
- Tell them you are not interested or that it is inconvenient.
Phone scams and cold calls
What you can do
- You can sign up to the Telephone Preference Service – a free opt-out service so that you do not receive unsolicited sales or marketing calls
- You can also purchase a call blocker such as TrueCall which blocks unwelcome callers and asks unrecognised callers to identify themselves before it puts them through
Postal scams, such as ‘unclaimed prize’ scams, bogus debt letters, lottery or ‘hard luck story’ scams.
What you can do
- You never need to send money to claim a prize/inheritance
- Register with the Mailing Preference Service (MPS) – this can stop junk mail but the postal service has a legal obligation anything that is addressed directly to you
- Put a ‘no junk mail’ sign on the front door.
Useful advice on spotting and avoiding scams can be found on the Age UK website
And the Metropolitan Police have produced a handy Little Book of Big Scams which you can view here
To report a scam call Action Fraud on 0300 123 2040
People can also be targeted by legitimate charities if they already support one or more charities, and this can place an undue pressure on people to sign-up for more charities than they can afford. A Fundraising Preference Service has now been launched to enable people to have more control over what charities contact them and how they are contacted.
Last week we shared the video Finding Patience which was one of two videos created by Health Education England aiming to raise awareness of dementia in the African Caribbean Community to facilitate early diagnosis.
Developed with experts from across the system, Finding Patience – The Later Years is the second film created by Health Education England that explores what makes good person-centred dementia care in care homes. The film follows the experiences of Patience and her family as she moves to a care home. It explores the challenges faced by care home staff and demonstrates what good quality patient-centred care looks like.
Link to the article
Link to video
Raising awareness of dementia in the African Caribbean Community to facilitate early diagnosis - A project by Health Education England
‘Finding Patience’ opens the door for health and care professionals to start talking about cultural sensitivities that may result in a reluctance to come forward and talk about concerns. It aims to encourage health and care professionals to break down barriers in order to reach people who may otherwise go undiagnosed or struggle in isolation to provide care within family units. It is also a resource for the African Caribbean community to help raise awareness and reduce some of the stigma surrounding dementia and encourage those who may have concerns about either themselves or a family member to seek early support.
We have now launched an innovative series of short films in six different languages giving information about dementia and relevant support services in the city. We commissioned the six short films - in Urdu, Punjabi, Cantonese, Somali, Polish and English-language - to address the stigma, misunderstanding and lack of accurate information currently available for the culturally diverse communities across the city. You can now view the films from our homepage or via our YouTube channel and hardcopies are available from 0117 904 5151
Some of the great feedback we have already received:
Participants/community leaders: “The films are fantastic as they are so respectful of culture and language. Beautifully done, with great thought. I can see the care and attention that have been put into them”
“Great work well done to you and the rest of the Team”.
Bristol BME Voice: “Fantastic short films on Dementia from @BristolDWS available in 6 languages!”
Local Councillor: “Thank you so much - what a great resource"
Local MPs: "This information is very valuable" / "Thank you once again for bringing these valuable educational resources to my attention"
Marvin Rees, Bristol Mayor: “Thank you for sharing these films with me. They will be a really useful tool for engaging with those communities who may otherwise find it difficult to access information on dementia.”
Posted at 09:16 on 01/08/2017
BREAKING NEWS! Our new short films talking about dementia and how you get can support in Bristol are now live!
Please click on the links under 'Dementia - Your questions answered' above
Posted at 16:11 on 31/07/2017
If you need information about the service contact us today