Building a Dementia Friendly Community Checklist



Building a Dementia Friendly Community

Checklist

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Perhaps, just perhaps, it is not what paths we choose to take in life;

but, by some chance, who we choose to travel those paths with.

A Dementia Action Alliance is the Path to take for the Future

Ian Sherriff & Helen McFarlane

University of Plymouth

July 2012

Building a Dementia Friendly Community Checklist

What is an Alliance?

“If we are together nothing is impossible”. Winston Churchill

The purpose of this paper is to give the reader information about setting up a Dementia Alliance/Dementia Friendly Community based on experiences in Plymouth and South Devon during 2011/2012

The Authors:

Ian Sherriff has considerable expertise in both strategic and operational management and research of public and voluntary services. He is a Trustee of the Alzheimer’s Society and a member of the Prime Minister’s Dementia Friendly Challenge Group.

Dr Helen Mcfarlane has considerable expertise in research and has recently published several research papers on “the Dementia Quality Mark for Residential Care, and been a co-author of “Early Diagnosis of Dementia in the City of Plymouth”.

Dementia Action Alliance (DAA) Dementia Friendly Community (DFC)

A Dementia Friendly Community recognises the great diversity among individuals with dementia and their carers, promote their inclusion in all areas of community life, respects their decisions and lifestyle choice, anticipates and responds flexibly to their dementia related needs and preferences.

Background to the Plymouth Dementia Action Alliance (PDAA)

The above statement was the driving force behind the Plymouth Dementia Action Alliance. The idea for the PDAA came out of a research programme being conducted by a small team of researchers from Plymouth University in 2010. The members of Plymouth University Dementia Research Team are Ian Sherriff, Dr Helen McFarlane, Professor George Giarchi, Dr Mike Sheaff and Professor Catherine Hennessy. The research aim was to explore objective two of the National Dementia Strategy (DH 2009) and how it was being implemented in the City of Plymouth Devon:

“All people with dementia to have access to a pathway of care that delivers: a rapid and competent specialist assessment: an accurate diagnosis sensitively communicated to the person with dementia and their carers; and treatment, care and support provided as needed following diagnosis”

During our interviews with carers, individuals with dementia and G.P’s about the early diagnosis of dementia in Plymouth other key issues were being raised. One area that became evident was that “lives of people with dementia and their carers in Plymouth would be enhanced if their everyday living tasks were made easier”. We were informed by them “that the vast majority of business, agencies and people in Plymouth had no perception of what life is like for individuals with dementia and their carers”. The challenge to us as a team was “could we make Plymouth City Dementia Friendly?”. Armed with these facts we decided to mirror the work of the National Dementia Alliance. However the National Dementia Alliance is very strategic in its nature. We wanted to be more operational with a strong action focus. To this end we formed a small planning team chaired by the Lord Mayor of Plymouth. The Lord Mayor agreed to support the PDAA and host its launch in the city. The next task for the planning team was to document the aims and objectives for the PDAA. The main thrust of these statements were that they must be achievable and most importantly they must be action focused.

The Check List for a Dementia Friendly Community

The following provides a basic checklist of items to consider when establishing a Dementia Friendly Community (DFC) or a Dementia Action Alliance (DAA). It is by no means exhaustive, but aims to guide and steer community groups towards potentially embedding a DAA/DFC within their local communities.

• Define aims/objectives of the DAA/DFC

• Formulate a steering committee for the implementation of the DAA/DFC (this could be made up of people with dementia, volunteers from interested public, private and voluntary agencies as well as universities and various other community and/or faith groups)

• Formulate a constitution for the DAA/DFC identifying where membership for the DAA/DFC will be drawn, who the representatives on the steering committee will be, the frequency with which the committee will meet and hold an AGM and the process by which resolutions and dissolutions can be made

• Formulate a project plan and define what is meant by a DAA/ DFC

• Establish milestones that need to be met throughout the process and monitor the progression of these through regular meetings of the steering committee

• Involve local authorities with the DAA/DFC (this could be either a city, parish, town, district, metropolitan or unitary council)

• Determine the sustainability of both the DAA/DFC

• Develop a DAA/DFC project/action plan.

• Develop an action planning questionnaire for signatories to a DAA/DFC.

• Employ (through the local authority if possible) a project co-ordinator to oversee the work of the DAA/DFC.

• In the longer term consider employing a Dementia Coordinator to develop the DFC/DAA.

• Once the above has been established, seek engagement/membership from the following agencies:

➢ Charity/voluntary agencies

➢ Criminal Justice agencies

➢ Digital/communications networks

➢ Health Care sector

➢ Social Care sector

➢ Leisure & Tourism

➢ Local Authorities/Government

➢ Retail sector

➢ Transport sector

➢ Utility companies

➢ Financial/business sector

➢ Church/faith communities

➢ HM Forces

➢ Press & media

➢ Emergency Services

➢ Other community groups

➢ National Union of Farmers

➢ Women’s Institute

• Hold an initial dementia awareness session to describe to your invited members what a DAA/DFC is and how they can become involved in establishing a DAA/DFC for their locality

• Offer awareness training for the members who sign up to the DAA/DFC and their employees

• Identify a method by which to determine how an organisation is dementia friendly and award them accordingly

• Identify the process by which to deselect an organisation

• Determine how to hold DAA/DFC to account on a local level

• Identify how national members can engage with DAA/DFC at the local level

• Identify a budget for the following, Room hire for meetings, postage, awareness training, project worker (this could be a person from one of the signatory organisations to the DAA/DFC therefore no outlay costs).

• Publicity documents and general stationery for the DAA/DFC.

• All of the above could be self-funded from within the DAA/DFC.

Issues you need to consider during your Steering group meetings

• What logo will you use to Identify DAA/DFC?

• DAA/DFC are more than a sign on a door it’s a “movement to change the culture of a community”

• What barriers do people with dementia and their carers face when wanting to participate and access services in their local community?

• What changes should organisations make in order to become dementia friendly?

• What should communities do to make their area more dementia friendly

• What should be the main outcomes to determine whether a city, town, or village is dementia friendly?

• What lessons can be learnt from dementia friendly communities already in place?

• Identify the business case for organisations to invest their time and resources to joint an DAA/DFC.(see Naval Base case study)

The above list represents some of the challenges which need to be discussed and resolved within the steering group to ensure that the DAA/DFC concept is achievable and sustainable.

Five Case Studies from the Plymouth Dementia Action Alliance (PDAA)

It became obvious early in the process of forming (PDAA) that organisations needed to understand what benefits they would gain by being part of this movement. The following five examples give a clear indication where the social and economic factors were a priority for these organisations to proceed.

Plymouth Naval Base.

The Naval Base in Plymouth was one the first signatories to sign up to an Action Alliance at the launch of the PDAA. Since then the PDAA have provided awareness sessions for members of Naval Families Service and Naval Base staff to raise awareness of the difficulties some of their staff face in maintaining caring duties alongside their work responsibilities. As a result of this and a business case by the Naval Base, Human Resources have re-structured their HR policies to reflect the needs of carers within the workforce and Naval Personal and Family Service (NPFS) have made it a priority to ensure that servicemen and women deployed on tours of duty are assured that their loved ones in need of care will be given the support that they require.

Dartmoor Rescue Team

The team at Dartmoor Rescue have pledged their membership of the PDAA by using their skills and knowledge to enable people to live well with dementia. Not only have they developed a highly sophisticated method of tracking the whereabouts of people with dementia who wander but also they have employed their services to providing guided walks for people with dementia and their family carers.

Plymouth City Council

Plymouth City Council has pledged that all their staff will receive dementia awareness sessions in the next year. They have also introduced the Dementia Quality Mark for all providers of residential care who wish to contract with the Councils Social Care commissioners.

Plymouth Raiders Basketball Team

The Raiders, who produce a weekly match programme, have dedicated one full page each week about dementia. This will reach their entire fan base.

Plymouth City Centre Manager

The City Centre manager is totally committed to implementing a dementia awareness programme for all the 400 retail outlets in the city centre.

Conclusion

As the American Author Napoleon Hill Stated “Don’t Wait, the Time Will Never Be Right”. Given that, according to the Alzheimer’s Society (2012) 68 % of Individuals with Dementia don’t feel part of their community and 61 % state they feel lonely in their communities, we say:

The time is right for communities to unite and start becoming “Dementia Friendly”

DDA/DFC Constitution

The following is an example of a constitution which can be used in setting up a DAA/DFC

Constitution for a Dementia Action Alliance

A Dementia Friendly City, recognises the great diversity among

Individuals with dementia and their carers, promotes their inclusion in all areas of community life, respects their decisions and lifestyle choice, anticipates and responds flexibly to their dementia related needs and preferences.

1. The name of the committee shall be The Dementia Action Alliance (DAA) Dementia Friendly Community (DFC)

2. The aim of the DAA/DFC is to develop Dementia Friendly Communities for people with dementia, their carers and families, voluntary and statutory services, businesses and the wider community. (National Dementia Strategy 2009 - Living well with Dementia, Prime Ministers Challenge on Dementia 2012 -2015, Dementia 2012 – A National Challenge)

Objectives of the DAA/DFC

• To seek membership of the DAA/DFC from the following groups: Charity/Voluntary agencies, Criminal Justice System, Emergency Services, Digital/Communications networks, Healthcare sector, Leisure & Tourism, Local Authorities/Government, Retail sector, Transport, Utility companies, Financial/Business sector, Church/Faith communities, HM Forces, Press and Media, Trade Unions, Community groups.

• To establish and maintain effective and supportive DAA/DFC through information sharing networks

• To provide a useful feedback tool that would be supported by: Practical guidance, advice, awareness and information and training through workshops and annual awareness days for the both the workplace and the community

• Ensuring throughout that the voices of people with dementia in City/Town/Village are heard and inform the work of the DAA/DFC

3. In furtherance of the aims and objectives, but not otherwise, the Committee may exercise the power to:

• Promote individual and community services for people with dementia, their carers and families across the City/Town/Village ensuring that people with dementia, their carers and families have a voice and are able to maintain and, where necessary, increase their social contacts within their local community.

• develop or contribute to the development of suitable appropriate services locally for people with dementia and their carers

• Work in partnership with local groups and organisations.

• Invite and receive contributions and raise funds where appropriate, to finance the work of the DAA/DFC, and to open a bank account to manage such funds.

• in collaboration with a University and others support research into the outcomes of the DAA/DFC for people with dementia and their carers in the area

• promote and support consultation and awareness training for all membership organisations

• publicise and promote the work of the DAA/DFC and organise meetings, seminars & and training as appropriate,

• take on and support volunteers (who shall not be members of the Steering Committee) to assist in the attainment of the aims and objectives of the DAA/DFC

• affiliate to any local or national group or association that the Committee decides is appropriate and disaffiliate from any group or organisation if continued affiliation be, in the Committee’s view, against the interests of the DAA/DFC

• do all such other lawful things as shall further the aims of the DAA/DFC

4. Membership shall be

• Open to anyone who has an interest in assisting the DAA/DFC to achieve its aims and objectives and is willing to adhere to the rules of the DAA/DFC including representatives from the City/Town/Parish Council, Health, Voluntary Sector, Retail Sector, Transport, Leisure, Media/Press, Dartmoor Rescue Team, Fire Service, Police, Hoteliers, Sports Cubs, Faith Groups, Tourism, H.M. Forces, Retail Sector, Utilities, a University and a person with dementia and their carer(s).

• All members may attend and vote at the Annual General Meeting and shall be eligible for election to the committee.

• The committee may terminate any membership of any member bringing the DAA/DFC into disrepute.

• The member concerned shall have the right to be heard by the committee before a final decision is made.

• A questionnaire will be sent to all organisations signed up to the DAA/DFC for a three month review of their progress to date.

5. Steering Committee

• A committee shall be elected/co-opted to manage the affairs of the DAA/DFC, consisting of Chair, Vice Chair, Treasurer and Secretary and core members who represent the following sectors: Local Government, Health, Retail, Faith, Communities, University of Plymouth, Individual with Dementia, Carers, Blue Light Services, Leisure/Tourism, G.P’s, voluntary sector and any other community group.

• All core members shall be elected annually at the AGM

• The core Members shall serve until the conclusion of the next Annual General Meeting after their election and are eligible for re-election.

• The Committee may fill any casual vacancy on the Steering Committee including vacancies among the core members and any person appointed shall serve until the conclusion of the next Annual General Meeting.

• The Committee may appoint/co-opt for an agreed time period such persons as it thinks fit as advisers; advisers shall not have voting rights

• The Committee shall meet a minimum of 6 times per year.

• The Committee can establish such sub-groups that the Steering Committee feel is necessary to achieve the aims and objectives of the DAA/DFC. Any such groups shall not enter into legal or financial agreement without the prior authority of the Steering Committee.

• The Committee will monitor support and review the development of the implementation of the pledges made by all organisations who have signed up to the aims and objectives of the DAA/DFC.

• The Committee will endeavour to evolve the ethos of the DAA/DFC throughout the community

• Appropriate substitutes can be nominated by a core member in consultation with the Chair of the Steering Committee.

6. General Meetings

The Annual General Meeting

• The Annual General Meeting of the DAA/DFC shall be held once a year.

• This shall be held not more than fifteen months after the holding of the preceding AGM.

• At least 21 days notice shall be given to all members.

• The purpose of the Annual General Meeting is to

• Receive and adopt the Annual Accounts

• Receive the Annual Report from the Committee

• Elect core members for the Committee

• Consider any motion before the meeting

• Appoint an appropriate person to independently examine the books and determine their remuneration (if any) for the following year

7. Special/Emergency General Meetings

• Special/Emergency General Meetings may be called by the Steering Committee whenever they feel it is necessary for the organisation and all members will have at least 21 day’s notice of the meeting.

• The notice of the meeting shall give details of the business to be discussed at the meeting.

• Only the business specified in the notice for the meeting shall be discussed at the Special/Emergency meeting.

8. Rules of proceedings at all meetings

• The Quorum the minimum number of members needed for a meeting to go ahead is five

• All questions at any meeting shall be decided by a simple majority in the event of a tie the Chair shall have a casting vote (a second vote).

• All minutes of the meetings will be circulated to core members by email for distribution throughout their organisation.

9. Funds and Finance

• All funds shall be devoted to the objects of the group. A bank account shall be opened in the name of the group

• All cheques shall be signed by 2 out of 3 signatories authorised by the committee none of whom shall be related or live at the same address.

• The financial year shall run from 1st April to 31st March

10. Alterations to the Constitution

Amendments to the Constitution may be made by a resolution passed by a majority of the core members of the Steering Committee at the Annual General Meeting or Special/Emergency General Meeting. Proposed alterations should be circulated to the membership not less than 21 days before the date of the meeting.

11. Dissolution

A resolution to dissolve the group must be passed at a General Meeting and carried by a two-thirds majority of those present. Any assets held by the DAA/DFC after the satisfaction of all debts and liabilities shall be given or transferred to an organisation with similar aims.

This constitution was adopted

on………………….

Signed…………………………………

The Following Individuals should/could form the Steering Committee for a DAA/DFC

Chair, Vice Chair, Treasurer, Secretary

Core members who represent the following sectors:

Local Government, Health Retail, Faith Communities, University/College

Individual/s with Dementia, Carer/s, Blue Light Services, Leisure/Tourism

Voluntary Sector, G.P.

The term of office for the above core committee will be one year

DAA/DFC Action Planning Questionnaire.

The purpose of this document is to understand the following from each organisation that have signed up to be part of a DAA/DFC.

• How would you describe your organisations role in delivering better outcomes for people with dementia and their carers?

• What are the challenges in delivering these outcomes from the perspective of your organisation?

• What are your plans to respond to these challenges in the next twelve months?

A copy of this form and the guidance notes on how to complete this form are on pages thirteen and fourteen of this document.

The Plymouth Dementia Action Alliance Project Team would like to thank all the individuals with dementia and their carers for their advice and guidance in developing the Plymouth Dementia Action Alliance. We would also like to thank all the organizations involved with the Plymouth Dementia Action Alliance for all their help and support in getting this project up and running.

The Plymouth Dementia Action Alliance Project Team 2012

Name of Organisation:

Email address:

1. How would you describe your organisations role in delivering better outcomes for people with dementia and their carers?

2. What are the challenges in delivering these outcomes from the perspective of your organisation?

3. What are your plans to respond to these challenges in the next twelve months?

Thank you

Guidance for completing Action Plan Questionnaire

1. How would you describe your organisations role in delivering better outcomes for people with dementia and their carers?

For question one, consider what it is your organisation can provide for people with dementia and their carers. You may be able to develop advice, guidance or information sheets for people with dementia. Perhaps there is support that your organisation could offer specifically for people with dementia and their carers. Is there research that could be conducted or funded by your organisation to increase understanding and awareness of dementia and provide policy recommendations on the delivery of care and service provision?

2. What are the challenges in delivering these outcomes from the perspective of your organisation?

For question two, consider some of the barriers that your organisation may face in delivering services for people with dementia and their carers. This may be a lack of understanding and awareness of dementia amongst members of staff or your organisation may have difficulties in consulting with people with dementia and their carers. Perhaps resources are a barrier for your organisation in terms of staffing levels or financial constraints, thereby limiting service provision and/or engagement with partner organisations, people with dementia and their carers.

3. What are your plans to respond to these challenges in the next twelve months?

For questions three, consider how your organisation will seek to breakdown those barriers raised in question two. You may seek to develop partnership working with other organisations or roll out dementia awareness training for all managers and staff. You may consider developing a more user friendly service that specifically addresses the complex needs of people with dementia and their carers.

The following are the suggested measurable out Comes for a Dementia Friendly Community. The Plymouth University Dementia Partnership Research team will be adopting some of these indicators in their research programme

► Increase in ability to live independently

► Increase in autonomy and ability to make own decisions

► Increase in confidence and caring capabilities

► Increase in support networks

► Improvements in general health and well-being

► Improvements in memory and cognitive abilities

► Improvements in fitness and nutrition

► Improvements in feelings of being safe and secure

► Improvements in the relationship between the person with dementia and their carer

► Reduce care giver burden

► Reduce social isolation and increase the ability to make new friends

► Reduce levels of anxiety and depression

► Reduce emergency admissions to hospital

► More opportunities for respite care

► More opportunities for participating in leisure/community activities

► Less likely to visit the GP

► Less likely to require early residential care

► Less likely to require hospitalisation

Research methods, targets, outputs and finding are summed up by the words of Dr. Carl Sagan quotes (American Astronomer, Writer and Scientist, 1934-1996)

“Somewhere, something incredible is waiting to be known.”[pic]

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PDAA

Plymouth Dementia Action Alliance

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