Powys Dementia Network - first online event!

by Sue Newham, Health & Wellbeing Engagement Officer

It was great to have 26 people attending the online Dementia Network event on 15th July. It seemed to go very well. 20 people filled in the post event evaluation and said it was either excellent or very good. Three people tried but were unable to attend because of technology issues.

People started by showing an object that linked with their lockdown experience. Gill used a pickaxe to create a new flowerbed on a steep slope and Mark's bucket full of nails, bolts and DIY bits was finally sorted out during lockdown!

These videos featuring people living with dementia and their carers were shown:

Life in Lockdown (6.5 minutes)

In 'Life in Lockdown' four people living with dementia speak with Dr Jennifer Roberts from the Dementia Services Development Centre. They talk about both the difficulties and and the upsides of Covid isolation. You can find out more here.

Yn 'Life in Lockdown' mae pedwar o bobl sy'n byw gyda dementia yn siarad â Dr Jennifer Roberts o Ganolfan Ymchwil DSDC. Maent yn siarad am anawsterau ac anfanteision ynysu Covid. Gallwch ddarganfod mwy yma.

Frannie's lockdown story (10 minutes)

Shirley's lockdown story  (5.5 minutes)

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These videos by Dementia Matters in Powys and their service users were shown:

DMiP Service User Review (8 minutes)

What we offer - DMiP Staff (4.5 minutes)

What people thought about the online Dementia Network

Comments about what people liked about the event included:

“Virtual friendship and enthusiasm of everyone.”

“I felt that people spoke very freely, despite or maybe because of the online setting.”

“Got a chance to exchange more ideas than we have at physical meetings.”

When asked about what to change for next time, more discussion group time was mentioned, along with having more people with dementia organising it. Most people felt that the length of the meeting was about right.

People discussed “The Good, The Bad and The Ugly” of the Covid 19 crisis

Good

• Many people enjoyed having more time for gardening, hobbies and spending time with family.
• Technology was mentioned as a learning point and virtual meetings as a good way to keep in touch with family and friends. Many felt they had got to know people better through using virtual meetings.
• People expressed pleasure in being at home, seeing more of partners and immediate family.
• Some people who were working were happy about working at home and travelling less, feeling that less travel gave them more time to meet clients’ needs.
• People working or volunteering for third sector organisations had seen a big increase in people volunteering, as well as in referrals.
• People mentioned strong community spirit as a real benefit of the situation.
• Getting outdoors, including gardening was enjoyed by many and felt to be good for wellbeing.
• A few people mentioned learning new skills or doing online courses.

Bad – things which were difficult or frustrating, but bearable

• Cancellation of planned trips or events.
• Shielding, social distancing and unclear Covid rules.
• Reduction of some statutory services and support, so there was not the same level of support coming into the home.
• Trying to get supermarket delivery slots was frustrating for many, as was shopping in person for those with sensory impairment.
• Being confined at home with several others was a frustration for some.
• The lack of family visits or not seeing family was difficult, including those living in care homes or shielding.
• Greater pressure on carers affected both those with older relatives to care for and parents looking after children. Many didn’t get any time off and found they were needing to take a lead where other services had been involved before.
• Technology was less of a positive aspect where poor internet was involved, and affected both service users and some staff working from home. Some people struggled with confidence around using tablets, laptops or smartphones to access meetings.
• Not being able to go to funerals upset some participants.
• For some people, having to carry on working outside the home put them under a lot of pressure.
• Service providers expressed sadness and frustration about clients they had not been able to connect with. They felt that for some services, you need face to face to be able to really understand the support that is needed.

Ugly - things that were very difficult to cope with

• Lack of tolerance and people getting angry.
• Lack of physical contact and hugs.
• Fear of the unknown and future economic uncertainty.
• Not being able to visit family and elderly parents.
• Had toothache all lockdown and no services to go to.
• Not being able to visit dying loved one.
• Those living with dementia have suffered from lack of contact and their condition has deteriorated through lockdown.
• Increased pressure on carers.
• It was difficult to accept the isolation that some clients were facing.

The second discussion group was about things we would like to “Keep, Chuck or Change” as we move forward

Keep

People wanted to keep the increased use of technology for keeping in touch, the closer community spirit and support, the better work/ life balance and the networking between grass roots groups and services.

Chuck

• The virus! We all hope for a vaccine.
• Queues.

Change

• Technology was felt to be very beneficial, but there needs to be more user friendly tech, more training and support for those who lack confidence, more emphasis on people being equipped for virtual meetings and better broadband coverage so rural communities don’t get left behind.
• There was concern for people with dementia who also have sensory loss, and the need to develop more proactive ways of reaching out to them and supporting them.
• The expansion of Dementia Friendly Communities across the county would help to raise awareness of dementia. People living with dementia may forget about social distancing or forget to wear masks.
• There is a role for “crisis experts” to be employed to help people deal with sudden, traumatic and unexpected crises. In a crisis, it’s difficult to make sense of all the information and to know how to access support.
• People felt that non-digital information such as leaflets, and mobile services such as Post Offices and Libraries were an important lifeline.

If you didn't attend this Dementia Network meeting and want to be included on the mailing list, please contact Sue Newham by emailing sue.newham@pavo.co.uk

Thanks to Dementia Matters in Powys for providing the technical support for the event and for liaising with members to get their input. DMiP staff have worked with PAVO to ensure that this event is relevant and informative for those living with dementia, their carers and organisations offering support. Diolch yn fawr.