More people are being diagnosed with dementia and, as our ageing population increases, so will the number of people affected. In Wiltshire there are currently over 6,500 people living with dementia and that is forecast to grow by almost 30 percent by 2020.
Healthwatch Wiltshire has made dementia one of its priority areas. We have been engaging with people affected by dementia in a variety of ways since November 2014.
People in Wiltshire living with dementia
Growth in cases of dementia by 2020
Monitoring Dementia Services
Healthwatch Wiltshire has brought together local charities in Wiltshire to form a partnership that will monitor and support the new Wiltshire dementia strategy. This innovative partnership includes representatives from Alzheimer’s Support, The Alzheimer’s Society, Age UK Wiltshire, Age UK Salisbury District, Carer Support Wiltshire and Swan Advocacy. Partners will gather feedback independently through a variety of means and then share findings at regular partnership steering meetings.
One of the main aims of our engagement is to make sure that the new Wiltshire dementia strategy is delivering in practice what it promises on paper.
We engage with people by holding several workshops throughout the year and by carrying our outreach visits to services. Our outreach visits involve visiting a variety of groups across the county including Dementia Café’s, Singing for the Brain groups, Day Centres and Older people’s forums. We also gather people’s views by phone, email, ‘community listening’s and through our other engagement work.
The Wiltshire Dementia Strategy
Wiltshire Council (WC) and NHS Wiltshire Clinical Commissioning Group (CCG) have put together a strategy to look at the care and support services that are available for people from the point at which they start to have concerns about their memory through to the end of their lives. It also focuses on the role that local communities have in supporting people to live well with dementia.
The key message of the strategy is that dementia is everyone’s business and we all need to play our part in making Wiltshire a good place to live with dementia.
Wiltshire Dementia Strategy
2014 – 2021
Workshops and Outreach visits
At each round of engagement Healthwatch Wiltshire aims to involve at least 100 local people across the county to monitor how services are working. We listen to people’s experiences and views of local dementia services and collate these into a report. This is shared with the partnership as well as commissioners and providers of services. The aim is to make sure that the voices of local people are ‘centre stage’.
First Dementia Monitoring Workshops – finding out the important issues for people, January 2015
We carried out our first round of workshops in January 2015. We held workshops in Devizes, Malmesbury, Salisbury and Westbury. 129 people attended these workshops and there were many interesting and wide ranging discussions:
Some key issues emerged:
Read the 1st Report
Information provision is a big issue
Many people reported difficulties in getting the information they needed and at the right time.
People have experienced inconsistency in quality of services
There seems to be a wide variation in the quality of services with some people having excellent experiences and some having very poor experiences of the same service.
Specialist services are good but not always easily accessible
People valued services such as specialist day centres but either didn’t know about them or had to wait for a place.
Dementia Education and Awareness is improving and is really important
People living with dementia want to be involved in making decisions.
Second Workshops and Outreach – Information Provision, June 2015
We held our second workshops in June and they were attended by 89 people. We also held outreach meeting at local groups at Tisbury and Malmesbury which were attended by a further 36 people. At these focus groups we focussed on Information provision to find out more about what information people felt they needed and in what form.
Some key themes about information provision emerged:
Read our 2nd Report
Talking to people about dementia: a focus on information provision
Many people use the internet as a way of getting information. The ‘Your Care, Your Support Wiltshire’ online directory will be useful.
Concern that people who didn’t have internet access would still be able to get the information they needed.
People wanted more, clear easily accessible information about available services.
People thought a short film was a good way of providing information.
Information provision needs to be timely, right information – right time.
Information and training provision valued by unpaid carers.
Third Workshops and Outreach – Primary Care, March 2017
We held one workshops and a number of outreach meeting at local groups across Wiltshire. We wanted to find out more about people’s experiences of using primary health care services, what they had found useful and what they felt could be improved. We talked to 195 people including people living with dementia, unpaid carers, older people, the general public, volunteers and professionals.
Some key themes about primary care emerged:
Read our 3rd Report
Talking to people about dementia: a focus on primary care
There is a lack of clarity and consistency in the dementia care people can expect and experience from their health care centre.
Diagnosis and referral
People said that they valued a clear, direct dementia diagnosis and onward referral – not everyone had this experience.
Review and support
People appreciated proactive dementia reviews where offered. However many people were concerned about the lack of ongoing support from their health care centre for people living with dementia.
Unpaid carers said that the approach of their health care centre had an impact on their quality of life.
Opticians and dentists
Most people said that they could access opticians and dentists fairly easily.
People found local pharmacists useful and felt more people may benefit from their services.
Report in partnership with Alzheimer's Support
Analysis of Dementia Community Support Services in Wiltshire – June 2017
The report is an evaluation of the provision and quality of dementia community services across Wiltshire.
This project included:
- Researching the provision of current services in order to get an up to date picture
- Reviewing previous engagement data and carrying out some new engagement to find out what people think is important in dementia community services
- Developing a quality framework for dementia community services which incorporates service user view
The work is part of Healthwatch Wiltshire’s ongoing focus on dementia as one of its priority areas, and we were pleased that Alzheimer’s Support asked us to impartially evaluate services. Alzheimer’s Support are now in the process of considering the report and will be reporting back about what they did in response. We will continue to monitor progress and keep you updated. The report was also presented to Wiltshire’s Health and Wellbeing Board where members, including the Leader of the Council and the Cabinet Member for Adult Social Care welcomed the findings.
Read our Report
Analysis of Dementia Community Support Services in Wiltshire
Case StudiesDementia Engagement Case Studies
We are carrying out One to One interviews with people living with dementia and their carers to showcase some personal stories.
Here are some of the things that people shared with us:
“Coming up to 90 I don’t know from day to day what will happen. I want to get everything in place – it’s a bit of a worry what will happen to him if I’m not around. I’d like to get it all settled so I know he will be well looked after”
“It was very difficult initially admitting that I needed help. I walked passed the Alzheimer’s Support office on several occasions before feeling able to go in. The day I walked in people were so kind – I got a really good response.”
“I realise I’m fortunate to be able to be still living at home and have a normal life. I don’t usually think about myself as having dementia, I tend to forget about it and just get on with living my life.”
Share your dementia story
Tell us about your experience with health and social care services for people with dementia in Wiltshire and we can make sure your voice is heard.
Dementia Engagement: Case Studies
NHS Wiltshire CCG needed to consult the Wiltshire population on the future permanent location of specialist dementia hospital care in Wiltshire. Healthwatch Wiltshire facilitated this which ran from 1st December – 10th March 2015.
Three possible locations were identified: Charter House, Trowbridge; Avebury Ward, Green Lane, Devizes; Amblescroft South, Fountain Way, Salisbury. We talked to the general public as well as people living with dementia, carers, family members and professionals and volunteers:
The key messages from all the responses were:
- People said that the quality of care should be the first priority rather than location.
- There was understanding of the financial benefits of the Amblescroft option.
- Concern about how carers and family members would be able to visit if the location was far away from home.
- People were concerned about the adequacy and availability of services available to care for people with severe dementia at home or in a care home.
- Many people feel that they do not have enough information about the services which are available to support people with dementia at home or in their local community.
The majority of people said that they would support the option of permanently locating hospital care at Amblescroft in Salisbury.
The main concern was visiting and people gave suggestions for what could be done to support family, friends and carers to visit
During the consultation Healthwatch Wiltshire collected people’s views on many issues related to the decision about the options. We will make sure that these issues are monitored and looked at separately. We will continue to monitor these services to check how they are working for people living with dementia and their carers.
Read our Consultation Report
Results of the public consultation on the permanent location of specialist dementia hospital care in Wiltshire
We have shared our reports widely with service providers and commissioners. We have met with some commissioners to make sure that the views of the people we have spoken to are taken into account when services are planned and monitored. We will be reporting on what has happened as a result of this later in the year.
Ongoing and Future Dementia Engagement
Primary Health Care
We are currently engaging with people to gather their views and experiences of primary health care services for people with dementia and their carers.
Dementia Champions Forum
We involved in the Dementia Champions Forum of Community Health Services in Wiltshire. We have facilitated involving carers of people living with dementia in these forums and presented the views of local people there.
Dementia Interviews at Services
We are carrying out 1 -1 interviews with people living with dementia and their carers at Care Homes, Day Centres and Sheltered Housing Scheme.
Dementia Training for Social Care Staff
Healthwatch Wiltshire has made dementia one it’s priority areas. This report focusses specifically on what people told us about dementia awareness and training in Wiltshire and is aimed to inform Wiltshire’s Dementia Commissioners and providers of services so that they can incorporate the voice of users and their carers into future plans.
Read our Report
Dementia Training for Social Care Staff