The aim of the event today is to help write a dementia strategy for North Wales. This strategy is being written by six councils and the health board in North Wales in partnership with other organisations and people affected by dementia.
The work began earlier this year. This has involved looking at data and research about what people need, a consultation to find out what people think works well at the moment and what needs to be improved, as well as looking at the services that are available to support people.
This presentation will cover what we’ve found out so far and then most of today will be spent in workshops where we can check if we’ve missed anything important and work together to agree what we should do next.
Research and data
The first part of the project was to collect together the research and data available about people living with dementia in North Wales. Here are some of the headline findings.
There are about 10,000 people living with dementia in North Wales.
Women are more likely to have dementia than men, possibly because they live longer (63% women, 37% men)
The main risk factor for developing dementia is age, although dementia is not an inevitable part of ageing. About one in 14 people age 65 and over have dementia, which rises to one in six people age 80 and over. Some younger people do develop dementia too, about 5% of all people with dementia developed it under the age of 65. And while these are not large numbers (this is about 500 people in North Wales) the consultation highlighted that they often find services set up for people older than them.
The number of people with dementia in expected to increase in North Wales as the total number of older people increases. This could mean another 7,000 people living with dementia in North Wales by 2035. Although to date the increase in the number of people with dementia hasn’t been as much as predicted as the percentage of people developing dementia in each age group has actually fallen. Researchers think this may be because of improvements in other aspects of health, such as fewer men smoking. There are no guarantees this trend will continue though so this is our best estimate at the moment.
Only about half of the people estimated to have dementia in North Wales are registered as having a diagnosis of dementia, called the dementia diagnosis rate. This is much lower than the rate in other countries in the UK, although partly we think this is due to problems with the way data is collected.
There are some groups that are more likely to develop dementia. People with learning disabilities, particularly people with Down’s Syndrome. Also, people with a hearing impairment that isn’t addressed, for example by wearing hearing aids. There is some evidence that there are differences between different ethnic groups too so we need to make sure our messages and services are reaching everyone.
Dementia can affect different groups of people who may need different kinds of support. We’ve already mentioned some of these, such as younger people but there are other groups such as LGBT people who face particular challenges, such as having experienced discrimination from health and social care services in the past.
People living with dementia also have physical health needs and need equivalent access to diagnosis, treatment and care as people who don’t have dementia. So we need to make sure everyone is fully included in the services we provide.
What people told us
We had around 250 people respond to the consultation from across North Wales. A lot of the responses came into the online survey but there were others from conversations with Emma from the Citizen’s Panel individually or at events. We also looked at findings people sent us from other consultations they’d already carried out.
There were a lot of different stories, some heart-warming and some heart-breaking. For example, some people had great experiences of support. One person spoke about how she’d discovered all kinds of new interests since her diagnosis as her care workers had worked with her to find out what she like to do and helped her try new activities. So now she’s out and about a lot more, has taken up playing dominos and enjoys meeting new people.
Whereas another person spoke about how difficult it had been finding activities for her husband to do who loved the outdoors and cycling. She’d found an activity session he enjoyed that was followed by a cup of tea and a chat but after a while they stopped doing the cup of tea and he didn’t want to go back after that so she had run out of ideas.
People also said how important it was to understand who different groups were targeted at, as some people with early stage dementia didn’t want to attend events with people who were in the later stages.
A lot of people said things had been improving. Particularly dementia friendly communities’ initiatives which had done a lot to raise awareness.
There were a lot of different activities available for people in communities although a few people made the point that everyone’s different. One person was frustrated by the assumption that everyone likes singing!
When it came to things that needed improving, the thing most often mentioned was support for carers, including opportunities for respite or breaks from caring. Again people stressed how important it is that these suit the people involved. For example, some people want someone to sit with the person they care for while they go out for a bit while other hate the idea of having a stranger in their home. This was particularly an issue for people with later stage dementia. There were examples of unpaid carers (friends and family) saying that they found themselves in situations where specialist support services phoned them to say they couldn’t cope with things that the carer had been dealing with every day without support or training. This highlights how different people have different expertise and how individuals and everyone involved in their care need to work together to share that expertise.
People also spoke about challenges of recognising the signs of dementia and taking away the stigma of getting help. One person talked about a friend who had been trying to hide symptoms for years because she had a family history of dementia and was afraid she was going to be locked up. People also spoke about how it could take a long time to get a diagnosis and how complicated it could be. This included having to tell their stories over and over again to lots of different professionals.
When it came to support after diagnosis people who took part in the survey had different experiences. There was some really positive feedback about people’s experiences of services. For example one person said they were ‘encouraged to make the most of everyday as long as possible by the wonderful consultant’. Whereas other people spoke about being handed a file full of information and getting really confused by the different services which didn’t seem to communicate with each other at all.
A lot of people talked about how important it was to value the care workforce and how much it helped to have the same staff working with them who got to know them and had the time to chat. A lot of problems were caused by having different people around all the time. There were similar issues in hospitals where wards could be noisy and disorientating and there’s much more that could be done to make them more dementia friendly.
There was a lot of support in the survey for focusing on the priority ‘living well for as long as possible’ and lots of ideas for how to do this including working with community groups. Transport and accessing these groups was a problem for some people, particularly in more rural areas. People who had someone who could drive them to things found it much easier to access activities than others. People also mentioned how the built environment, housing and technology could all help support people with dementia.
A theme running all through the consultation was how important it is for professionals to listen to people living with dementia and their carers and share decisions about their care.
People talking to me and not just my family – I want to choose and have a say in what happens.Participant
Those were just some of the key points from the consultation. There’s a 70 page full report which includes much more and where we’ve tried to use people’s own words as much as possible.
The next part of the work was service mapping. We shared a list of the services we were aware of and asked people to add anything that was missing. The list includes services that help people find information, memory clinics, advocacy, community services, day care, care homes and home care and support for carers.
We’re now starting to look at how well these services match with what we think is needed. This is a really tricky thing to do as it might look on paper like there are a good range of services but actually there’s a huge waiting list for some of them. Or it looks like lots of services are duplicating each other, but when we start talking to people about them it turns out that different people really value one service over another.
The event today will be a really useful part of the service mapping process as we have people here with all kinds of different experiences.
From what we’ve collected so far there seems to be some excellent work taking place across North Wales. The mapping identified around 160 different services available to support people living with dementia. Dementia friendly communities are spreading fast and there are lots of different activities taking place.
Some of the issues that we think were identified:
- There are at least three different online service directories that list all the support available and are slightly different. We can look at making links between them and encouraging organisations to keep their details up to date.
- There are a lot of different services run by different organisations and funded from different places. We need to make sure the organisations who fund services are working together so they don’t create an over-complicated mix of services as well as making sure we keep enough diversity and flexibility to meet all the different needs of each individual and carer.
- Many services are only available to people with a diagnosis, and not to people who have a mild cognitive impairment and/or are going through the process of assessment and diagnosis.
- Many services are difficult to access for people in rural areas and while most services are committed to providing support through the Welsh language this doesn’t always happen in practice.
If you disagree with any of this or think we’ve missed something there will be a chance to pick this up in the workshops.
Putting it all together
Now we’ve gathered all this information we need to pull it together into a strategy and agree what we need to do to put it into action.
Most people in the consultation agreed with using the themes in the Welsh Government Dementia Action Plan in the strategy with the addition of a specific theme about carers. A lot of people mentioned issues that we’ll need to make sure are included under each of the themes as well such as including end of life care in the need for increased support theme.
It looks like the priorities will be:
- Risk reduction and delaying onset
- Raising awareness and understanding
- Recognition and identification
- Assessment and diagnosis
- Living well for as long as possible
- Increased support
- Support for carers
So far we’ve gathered a lot of different information about dementia in North Wales, including data and statistics, consultation findings and information about the services available at the moment. We’ve looked at how that information ties in with the Welsh Government Action plan and written a summary of what we’ve found out about each theme.
What we’d like to do now is to check these findings with you in the workshops and start to develop the recommendations and actions needed to put the strategy into practice and improve support for people living with dementia and carers in North Wales.