Powys Dementia Network – a dementia diagnosis

The latest Powys Dementia Network event took place in late January 2021. As is the norm these days it was held online; the second time for this network due to the Covid pandemic. It was another great success, attracting a huge variety of organisations and individuals from across the county. These included people living with dementia and those caring for them, colleagues from Dementia Matters in Powys, Alzheimer’s Society Cymru, Powys Teaching Health Board and Dyfed Powys Police to name just a few.

The theme this time was “Diagnosing Dementia.” The event was organised by our colleague, Sue Newham, the Engagement Officer in our Health & Wellbeing team, in partnership with Dementia Matters in Powys. They worked with other voluntary and statutory sector colleagues to bring some excellent information and discussion around the theme of dementia diagnosis to the afternoon.

As always we will try to capture some of the spirit and information from the event here, but if you would like to find out more and / or attend future events then please get in touch.

The previous online event, which took place in August last year, was also captured for the blog in Powys Dementia Network – first online event.

Supporting people to attend a Zoom network meeting for the first time

We were particularly pleased to welcome Shirley Humphries (pictured above), as she couldn’t attend the first online event due to technical issues on the day. Shirley lives in North Powys, is nearly 87, and has previously spoken about her experience of assessment for dementia at a Powys Dementia Network face-to-face event. However, this was her first online experience of the network, and we decided to ask how it went for her this time.

Shirley told us that her daughter, Sue, had arranged for her to have a different tablet which was better suited to using the Zoom app. The tablet was donated by a member of staff at PAVO, after she heard of Shirley’s Zoom issues!

“When it comes to using Zoom, I’m not that way inclined,” Shirley said, however, with support from her daughter, she was able to follow the meeting link on the tablet, join and take part in the Dementia Network event. Shirley is also enjoying attending the ‘Wiggle with a Giggle’ sessions on Zoom which are run by Dementia Matters in Powys – and the more Zoom events she attends the easier it gets to use the technology. “It’s all about learning what to do, for example sticking your hand up if you want to speak.”

Here are just a few of the key points raised in the different discussions that were held in the various Zoom break-out rooms. If you would like the full notes please contact Sue Newham.

Q & A sessions with Memory Clinic staff across Powys

These sessions allowed people to find out more about the dementia diagnosis pathway in Powys. Heather Wenban, the Dementia Lead for PTHB, is working to improve dementia care across Powys, and spoke about the dementia steering group which works to implement the Dementia Action Plan in Powys. (You can read the Dementia Action Plan for Wales). Powys seems to be quite proactive compared to other areas.

Heather added: “I would like to see one dementia service where people can access a diagnosis. Currently the referral has to come through the GP to rule out physical reasons for someone’s symptoms. Trying to put the right pathways in place is difficult because people are all different. It can be the person themselves that needs support, or people caring for them.”

Janet Davies is the Dementia Advisor for North Powys. She works with patients and families to help them get the support they want. She said: “The person might go to the GP with concerns. The GP will give an initial test and then make a referral to the memory diagnostic clinic, if it reaches a certain level. Whilst they are waiting, they will go for a scan, blood test and ECG (electrocardiogram). The consultant reviews it all and makes a diagnosis. The consultant also assesses whether the patient or family needs support and may refer to the Dementia Advisor.”

Heather Wenban and Kerry Phelps (Alzheimer’s Society Cymru) agreed to work together to create a booklet and information pack around the dementia diagnosis journey in Powys.

Shirley listens to Inspector Brian Jones at the Powys Dementia Network event - 3rd row, 3rd from the left

How can the diagnosis process be improved?

• In general, it was felt that people still don’t know enough about dementia and so there is a stigma around it. Dementia is not just about memory loss. Sometimes people are not being diagnosed with dementia because of mental health and other issues masking the problem.
• It is important to recognise that no two patients are the same, and a one size fits all approach just doesn’t work. However, there does need to be a seamless process of diagnosis, and the process needs to be explained to people so that they know what is going to happen and what to expect at each stage.
• People should be made aware that people are entitled to have an advocate supporting them at appointments, either a family member, friend or professional advocate.
• More support is needed during and after diagnosis. It would be good to have an information pack or wellbeing pack that supports the person with their dementia journey.
• Support workers should be available who can provide tailored support. Follow-up is extremely important. People need aftercare and the opportunity to ask questions.
• People need to be able to talk to someone who has been through it. People living with dementia connect more with other people who are living with dementia. Support groups are very important.

What stops people going to their doctor when they first notice symptoms of memory loss?

• Personal fears and attitudes, including fear of the unknown, of change, of perhaps moving to a care home, or of changes to relationships / friendships. Also the stigma relating to dementia can be a barrier.
• People may be in denial or scared that it is something other than dementia.
• Families may be worried about mentioning to their parents / relatives that they need to seek help, or to other family members that they have concerns about that person.
• Fear of losing independence, such as losing their driving licence in an isolated rural area.
• A lack of awareness that it is possible to live well at home with dementia.
• Access to GPs is perceived as being difficult, especially at this time, and the quality of the relationship with the GP may not be good.
• People may have differing viewpoints about dementia to the professional care service and may wish for a non-medicalised approach.

How can we make it easier for people?

• Raise awareness with a collaborative approach that involves statutory bodies, private sector, third sector and communities to provide support, remove stigma and raise awareness. We need to show that it’s alright to talk about memory loss and dementia.
• People need to be aware that memory problems may be associated with other conditions other than dementia. Putting off going to the GP can mean you don’t receive help with other illnesses.
• A wider campaign showing people in the early stages of dementia to alter people’s perception of what dementia is. Individuals living with dementia telling their story is one of the most powerful ways of reducing stigma around dementia. People can and do live well with dementia.
• Encourage and develop Dementia Friendly Communities.
• Provide information about where to seek help, diagnosis, and support through a wide variety of channels.
• A single point of contact would be good.
• Develop an online self-assessment checklist that people can run through which can tell them if they should seek further help.
• Zoom meetings / telephone conversations can be quicker for getting in contact with people because there is less travelling. With Zoom meetings, more people are able to attend. This option is not possible for everyone, however.
• Increase awareness of the Herbert Protocol to inform emergency services.

All in all this Powys Dementia Network event was an excellent afternoon of information sharing and discussions, and Shirley was able to take part throughout.

Heather Wenban added: “The information that you’ve gathered today, will feed into the next consultation for the Dementia Action Plan which is due to finish in 2022.”

The next Powys Dementia Network event is planned for Thursday 15th July, 2pm - 4pm. Sign up for Dementia Network emails and find out about future events by contacting Sue Newham, Engagement Officer at PAVO, by emailing sue.newham@pavo.org.uk or ringing 07739 984 233.