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Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach
†The Care of Older People Information Set (COPIS) is an ‘information set’ jointly developed by NHS QIS and SWIA containing seventeen key indicators that can be used to assess outcomes for older people and partnership working between health and social work services.
Preamble
A dementia-friendly community can be described as:
‘A city, town or village where people with dementia are understood, respected and supported, and confident they can contribute to community life.
In a dementia-friendly community, people will be aware of and understand dementia, and people with dementia will feel included and involved, and have choice and control over their day-to-day lives.
Alzheimer’s Society, 2013
source p 2
Contents
- Introduction
- DIY DMC justification
- A solitary in-pipeline DMC within a DFC
- A DFC story
- A two-way process
- Exclusion
- Young people
- DIY DMC Advisory Board
- The original Worcester University statement
- Small country but in the lead
- Job description – Dementia Friendly Communities Coordinator
- Dementia Action Alliance
- Looking at your county to see where the DFCs are and what tips you can acquire
1 Introduction
- If you don't know if you live in a DFC, search the pages after downloading from here. 155 on 8 Oct 2016 145 in pipeline here
- Your DIY DMC is/will be the outcome of local need and local support. Although not at first, you could work towards gratitude for that local support.
- Your participants knowing that from the start, however, promotes group cohesion, gives anticipation, good ownership, and empowerment.
- You will need/want to work with various branches of local dementia care provision. One possible determinant of the extent and quality of it can stem from three variables:
- You live in an established DFC
- a community within the recognition process for dementia-friendly communities here
- which is not in 1 or 2
2 DIY DMC justification
- With only 300 DFCs, on the cards, it is not a large platform, . . .
- . . .and there's only two established DMCs (three in pipeline - here - 2.3 to 2.6) . . .
- . . .two of which are in Herefordshire and Worcestershire which are not on the established DFC list . . .
- . . . and so it is self-evident that your DMC is justified in taking the DIY route.
- And good luck to Brecon in taking the long-haul flight. No mention there of its DMC work here and it is progressing here.
3 A solitary in-pipeline DMC within a DFC
- A good outcome of Brecon being a DFC. Being on the ball, it took up with Dementia Action Alliance here.
- Brecon mentions Hay-on-Wye but there is no mention of a DMC. You saw Hay in 2.3.
- Your DIY DMC could beat any Brecon or Hay DMC to the winning post!
4 A DFC story
4.1 Creating Dementia Friendly Communities: Mary’s Isle of Wight story
- Mary has Alzheimer’s disease, and is a member of the Dementia Friendly Communities steering group for the Isle of Wight project being piloted in Ryde, Mary was a regular passenger on the Island’s Southern Vectis buses and had experienced sudden memory loss on two occasions, unable to recall where she was going.
- On the first occasion she was treated with respect, patience and understanding from the driver, which allowed her panic to subside, which then helped Mary to start recognising landmarks. Unfortunately on the second occasion she was hurried and when she tried to explain where she was going, she was told there was no such place and was made to feel very stupid.
- She was left embarrassed, feeling frightened and vulnerable, not knowing what to do next. Mary would not use the bus after this latter experience. However, as part of the ‘Dementia Friendly Community’ work, Southern Vectis have been a strong partner working with Age UK Isle of Wight.
- As a direct result of Mary’s experience, they produced a series of ‘Safe Journey Cards’; the cards cover a range of issues including: ‘I am visually impaired’ ‘In case I fall’, ‘I have difficulty walking’, ‘I am hard of hearing’, ‘I have difficulty speaking’ and most pertinent to this project a card which says, ‘I have memory problems’.
- Mary was issued one of the ‘Memory problem’ cards at the official launch of the Ryde pilot project. Mary tried out the card. The driver immediately recognised it and went out of his way to ensure she knew where she was going. She said he couldn’t have done more for her, and as a result of this will continue to use the buses for as long as she is able.
- Age UK Isle of Wight is working closely with Southern Vectis to ensure all staff are familiar with these cards and drivers are trained to effectively communicate with people who have dementia. Until communities understand the problems which people with dementia face on a daily basis, these situations will happen again and the resultant loss of independence and self worth leads all too quickly to loneliness and depression.
- Contact details - Emma Lincoln - Health and Wellbeing Development Officer 01983 525282 Age UK Isle of Wight 147 High Street Newport Isle of Wight PO30 1TY
- source p 23
4.2 Start collecting good and bad stories.
5 A two-way process
- The opportunity to ensure that your DIY DMC is seen by your local community as being involved in a two-way process of support must not be missed.
- The participants, volunteers, and staff when appointed will all feel they are saying thank you to the community for the help received in setting up the DMC.
- Finding out if such a story might be repeated on their doorstep will be part of the fact-finding component of an interesting project.
- Resultant publicity ought not to be the driving force.
6 Exclusion
- Further to the the Pitfalls and their Minimisation page here the Worcester University project is ". . for .. people with dementia and their carers." as stated six times here.
- The project misses the boat regarding the future and potential pre-dementia cases. People worried about memory ailment and other indications have not been encouraged so far, which is understandable within a one-theory research project.
- However, it is hoped that your DIY DMC will open its doors to people within 6.3. At least encourage them to come in and talk it through. You can advise the GP as the next stage.
7 Young people
- Help explore educational opportunity to prepare young people for a likely future role as a dementia carer.
- Add to that, their role in creating Dementia Friendly Communities.
8 DIY DMC Advisory Board
- Which takes us into the realm of the DIY DMC Steering Group or Advisory Board
- It is assumed that once your DIY DMC is running, you will have attracted local interest. If suitable people do not come to you. on your bike.
- You won't be doing much within this page immediately, so enter into full discussion before starting formally. Meanwhile, you can - 3.2 Start collecting good and bad stories. Operate informally and within the two-way process.
9 The original Worcester University statement with added links
Could Meeting Centres be a “what’s next?” step for local DAAs
or Dementia Friendly Communities? 2/12 here
There does not seem to be any outcome to the question.
10 Small country but in the lead
10.1 Further to talking about Brecon, Dementia Friendly Communities Coordinator (Cardiff) source until filled here
11 Job description – Dementia Friendly Communities Coordinator
A DIY DMC should/will liaise with people of this order, even be involved in appointing them.
Any local Mental Health Group - ditto.
Reference numbers added.
- To build relationships with and invite businesses, civic organisation,community organisations, local groups, health and social care providers etc.to join the community and support them in the process
- To create a framework in which local community activities, meetings and events are structured so that they can be self-sustaining once the support of the post is withdrawn
- To coordinate and manage the local community meetings, including setting agendas, creating an action plan, booking a venue, distribution meeting notes etc.
- To have an exit strategy in place for this role from the outset
- To support the delivery and sign up to a local dementia action plan
- To promote the work both locally and nationally and support the development of dementia friendly communities
- To source opportunities for new or ongoing funding and supporting with applications for funding so communities can continue to exist once the post is withdrawn
- To establish systems for monitoring and evaluating the work of the community
- To report evidence of good practice, success stories and areas of risk to the project to the Regional Operations Manager.
- To record information that ensures accurate and timely reporting, making use of Society supported systems and processes as appropriate and ensuring that information is issued to the relevant audience.
- To represent Alzheimer’s Society and promote the needs of people affected by dementia across the locality.
- To raise awareness of dementia by supporting awareness raising activities of organisations
- To adhere to all the Society’s service standards, policies and procedures
- To comply with the data protection regulations, ensuring that information on clients remains confidential
- To be responsible for personal learning and development, to support the learning and development of others and the whole organisation
- To work collaboratively with fundraising and media and campaign teams, sharing responsibility for the achievement of jointly agreed objectives, as appropriate
- To work in a manner that facilitates inclusion, particularly of people with dementia
- To implement the Society’s health and safety policy and procedures, ensuring that all practices and procedures are undertaken in accordance with a healthy and safe working environment and that all staff and volunteers for whom you may be responsible are aware of their responsibilities in respect of their role, monitoring data and recommending action as required
- To administrate and organise own work to ensure that it is accurate and meets quality targets, reasonable deadlines and reporting requirements
- To follow the Society’s management information guidelines and requirements, including ensuring appropriate monthly measures on service usage levels are collected and submitted on the services database or other systems in accordance with deadlines
- Where appropriate, to recruit, induct and support volunteers
42 Under Skills and experience later on, the doc says:
An understanding of the needs of the business community in relation to the
part they play in the establishment of dementia friendly communities
43
Earlier, it says
They (DFC Coordinator) will also be required to establish systems to monitor the work of the community.
12 Dementia Action Alliance
- The National Dementia Action Alliance brings together members with a national footprint, working to improve the lives of people with dementia and their carers within health and social care. source
- Members
- One early task is to find out how many and which of your local orgs are within the DAA
- Translate 12.1 into local terms
- Doubtful if it will respond. Try your local trader association.
- Searching 12.3 is not practical
- Note that the DAA is only for established orgs.
- The local DAA is vital to the process. Although "this could be" is stated, you don't have much to work with.
- By registering for the process your community commits to the following conditions: . . . providing information on progress on a local webpage or site, for example this could be the local Dementia Action Alliance page.
13 Looking at your county to see where the DFCs are and what tips you can acquire
Herefordshire Dementia Friendly Communities here
