Details:

Venue: Devon House, 58 St Katharine's Way, London, E1W 1LB

Time: 1-3pm

Date: 08/04/2015

Attendees:

Peter Ashley - Deputy person with dementia representative Melanie Blake – Bupa – On behalf of private sector co-chair Graham Stokes Prof Dawn Brooker – Research representative (dialled in) Nikki Crowther – Head of Community Engagement (as non-voting participant -dialled in) Heather Gilling – Local representative (dialled in) Karen Harrison-Denning – Clinical representative Jeremy Hughes – Not-for-profit sector co-chair Lorraine Jackson – Department of Health (as non-voting participant) Simon Kitchen – Executive Lead, DAA Secretariat Dan Snipe - DAA Treasurer Peter Watson – DAA Affiliate carer representative Zoe Willetts – DAA Assistant

Apologies

Prof Alistair Burns – Statutory sector co-chair Peter Dunlop – DAA Affiliate person with dementia representative Prof Graham Stokes – Private sector co-chair

Abbreviations

SK – Simon Kitchen – DAA Executive Lead ST – Sarah Tilsed – DAA Engagement Officer RA – Renee Arceo – DAA Digital Officer ZW – Zoe Willetts – DAA Assistant

Nb. The papers include additional information presented verbally to the Board but not included in the original briefing.

Welcome and opening remarks

Regret was expressed that Prof Alistair Burns was absent from the Board Meeting. The Board agreed to engage with Alistair and ensure his full involvement in the Right Care and future meetings.

Board Meeting Minutes from 8th April, 2015Dementia Action

Hustings

Updates

The national DAA Secretariat has been working with the Alzheimer’s Society to organise a ‘dementia hustings’ for the 13th April

Paul Burstow has been confirmed as the Lib Dem spokesman. Baron Hunt of Kings Heath has confirmed for Labour and negotiations are currently ongoing with the Conservatives about having either Jeremy Hunt or Jane Ellison

Voting buttons won’t be available for the day but we are exploring the use of voting cards instead

Invitations have gone out, based on the colleges recommended by the Board, and 40 have confirmed already

Tania Bryer, of CNBC, is confirmed as chair http://en.wikipedia.org/wiki/Tania_Bryer

Discussion

The Board were positive about progress made and look forward to attending.

Recruitment

Updates:

The DAA Assistant position has been filled by Zoe Willetts who started on 10 th March. She has already supported ST on the delivery of the DAA Quarterly Meeting on 20 th March. Zoe previously worked at the mental health charity Twining Enterprise. Her priorities over the next three months will be:

o Working with SK and ST to ensure that member action plans are updated and financial and in-kind contributions are brought in

o Supporting ST on organising the DAA / Alzheimer’s Society Hustings and Quarterly Meeting on 20th May

o Supporting RA to keep the website updated and canvassing news stories from members

o Proofing member action plans for the Language Call to Action The DAA Partnership Manager has been formerly recruited and will be starting in May 2015

– when SK returns from annual leave. Kelly Kaye brings a range of skills and experience, including running a community outreach service for people living with dementia. Her immediate priorities will be:

o Disseminating and promoting the sign up of the Dementia-Friendly Hospital Chartero Developing a programme of events for hospitals signing up to the Charter.

Discussion

The Board welcomed progress on recruitment.

Member updates

Updates:

The DAA Secretariat has been proactively chasing members to update their action plans ahead of the General Election. This includes:

o Three personalised emails to each national member – asking them to update their action plan before the 31st March

o Call out to all members at the Quarterly Meeting on 20th Marcho Pro-active calls / meetings with Royal Colleges to update their action plan in line

with the Right Care The work has resulted in over 61 national members updating their action plan since the start

of 2015. An additional 43 members have submitted Annual Report contributions but not updates. A total of 78 national members have not submitted either

The DAA Secretariat will be contacting the remaining national members who haven’t updated their action plans in April, in time for the General Election.

Discussion

The Board questioned whether there was a pattern to which organisations are updating their action plans and whether there is feedback from organisations about why they are not updating

SK confirmed that it is a mix of organisations that have not updated their action plans. Reasons for not updating varied from leads moving on, challenges using the website, members failing to prioritise updates and members not fulfilling their actions

There is less concern about national members who have not formally provided updates but are in regular contact with the DAA Secretariat, as it is clear that they are taking action. There are though a large number of members that the DAA Secretariat are not aware of taking action

The Board agreed that if members make no contact, and do not update action plans or send annual reports, there should be a consequence. However, the approach should include a “carrot and stick” to prevent losing members who are genuinely taking action.

Action

A letter will be sent to all members who have made no contact, and have not updated their action plan or sent an annual report. This letter will include the following information:

o Members can no longer use the DAA logo until they provide an updateo The advantages of being a membero Ask for feedback about why members find it difficult to provide updateso The next board meeting will review what the consequences should be for those

members who still have not provided an update. SK will produce the letter, which will be reviewed by the Prof Dawn Brooker and Peter

Watson.

Webinars

Updates:

ST has organised three webinars since the last Board Meeting, with an average of 50 people dialling into each of them. They covered technology, youth engagement and speech therapy.

Topics are chosen based on previous quarterly meeting agendas and direct approaches from members to run them.

Website

Updates:

In March the DAA website experienced its highest ever usage with 8,613 unique visitors having 11,855 sessions. There was a particular spike in usage following the Quarterly Event on 20th March when the Language Call to Action was launched

Minor amends have also been made to the ‘back office’ side of the website to provide greater control over what Local DAA Coordinators can access and change.

DAA Secretariat Network

Updates:

The DAA Secretariat Network is the custodian of DAA values and provides light touch support to local DAAs

Since the last Board meeting RA has inducted 18 Local DAA Coordinators. The increase in inductions is the result of a temporary influx of Coordinators / Project Managers recruited by the Alzheimer’s Society using monies from the Department of Health

To reduce future capacity constraints, RA has:o Created a central resource and webinar repository so new coordinators can brief

themselveso Trained the trainer so Regional Coordinators can train local DAA Coordinators

RA and SK will work with Alzheimer’s Society to develop a sustainable model of support to reduce national DAA involvement.

Newsletter

Updates:

DAA newsletters go out at the end of the month to all national and local members (via local DAA Coordinators/ Project Managers). The February addition included ten member stories and asks, such as the launch of the Clinical Research Network, a master class in technology and dementia by the University of Bournemouth, a call for evidence for Dementia 2015, and the Dementia 2020 Vision

The next newsletter is due at the end of April. There will be an election feature, which will include links to members’ manifestos.

Discussion:

The Board agreed that there should not be links to members’ manifestos in the newsletter, as there is a risk that it would create too much work to compile a complete list of members. In addition, it is questionable how relevant this would be to the DAA and it could alienate members who are not politically involved.

Action:

The DAA Secretariat will provide a general mention of members’ manifestos in the newsletter, without any specific links

In the next quarterly meeting, review activity around the election and think about a strategy for the next election.

Dementia Words Matter

Updates:

The Joseph Roundtree Foundation has given the DAA £2,000 to provide light touch support to a campaign to change the use of language on dementia

The Quarterly Meeting on the 20th March provided a launch event for the campaign There will be follow up work proofing member action plans for inappropriate use of

language 95 organisations have already signed up to the principles.

Discussion:

The Board agreed that the use of inappropriate words to describe people living with dementia is widespread and supports Dementia Words Matter. It was agreed that it is important to explain the rationale to people

Karen Harrison-Denning and Jeremy Hughes discussed the need for language guidelines. The Board fully supported the development and dissemination of them.

Action:

The DAA Secretariat should work in partnership with DEEP and JRF to support the development and dissemination of best practice language guidelines, which are endorsed by the relevant organisations.

The Board proposed that the DAA Annual Event would be a useful forum to launch a second phase of the campaign.

Carers’ Call to Action

Updates:

The transition of the Carers’ Call to Action is entering its final phase Communications have been issued to national and local members thanking them for

participating in the call and informing them of the transition The Carers’ Call to Action was given pride of place at the Quarterly Meeting on 20 th March

providing an overview of achievements and a verbal briefing on next steps A Final Report will be produced and given to the Board following the formal end of this

phase of the campaign

Discussion:

Peter Watson reported with feedback from the National Family Carer Involvement Network that they felt the session hadn’t been given ‘pride of place’ at the Quarterly Meeting and had been pushed to the end of the day when some of the delegates had already left

The DAA Secretariat responded that the new National Family Carer Involvement Network were given a longer session of 45 minutes, had been a regular feature of the DAA Quarterly Meetings and Annual Events and had received direct funding from the DAA for the transition of the Carers’ Call to Action to the National Family Carer Involvement Network

Action

Peter Watson agreed to provide feedback to the National Family Carer Involvement Network.

Board discussion updates

Quarterly Meetings

Update:

The Quarterly Meeting was held on 20th March at College of Occupational Therapists. It was attended by approximately 80 delegates. The day covered reducing the risk of developing dementia, the launch of the language call to action and a member update on the transition to the new network.

82% of the delegates (giving feedback) said they were either very likely or likely to take action on dementia because of attending

61% agreed that they were optimistic about the future of people affected by dementia because of attending this meeting

86% thought the level of information provided was about right 72% thought the length of presentations were about right too.

Highlights:

People affected by dementia talking about the importance of language

Things to improve:

The venue was considered too small and stuffy (though this was a free venue so important to manage expectations)

Some members can be too aggressive in their questioning.

Looking forward:

The next Quarterly Meeting will be on 20th May and held at the Museum of Liverpool. The focus will be on creative therapies

An agenda drafting session was held on24th March. Over ten members took part and a range of topics and speakers were canvassed including: academic studies on the value of creative therapies, dementia and fashion, drama therapy, music therapy and how to develop creative activities in care homes. The third quarterly meeting of 2015 will be on 22nd September and hosted by the Royal College of Nursing in London. The proposed theme is protecting people with dementia with an emphasis on safeguarding.

Discussion:

The Board gave suggestions for topics to be covered at future meetings. These included:

o Post-election review o Protection of people living with dementiao Assistive technology o Social care –example - the transition from care in the community to residential care,

or the transition from work to retiremento Primary care, with a focus on GPso Dementia-friendly tourismo BAME communities and dementia.

Action Required:

Dawn Brooker will chair the next quarterly meeting A chair for the meeting on 22nd September will be decided at the next board meeting. Board to provide feedback on ‘protecting people with dementia’ as the theme for the

September event.

Right Care: Creating dementia friendly hospitals

Update:

A project plan has been created and attached to this document for feedback The next phase will start properly in May when the Partnership Manager starts The Right Care will centre on a taskforce of senior health stakeholders such as Royal

Colleges, regulators, charities and frontline clinicians It will start the dissemination of the Right Care Charter, with the target of 30 hospitals signed

up Hospitals would conduct a self-assessment form and the Right Care would pair up the

strengths and weaknesses of hospitals The Right Care would then work with Royal Colleges and Strategic Clinical Networks to run a

series of events that would share good practice on different elements of the Charter.

Discussion:

The Board overall welcomed the plan and said it was clear and exciting Peter Ashley and Peter Watson commented that there needs to be some more clarity

around the terms “people affected by dementia” and “secondary care” Melanie Blake, representing Graham Stokes, suggested the DAA compile lists of local

dementia services, which can be used by hospitals The Board agreed that a task force should be set up to assess whether hospitals meet the

dementia friendly standard. There was agreement that the CQC could assess hospitals as part of their process. It was suggested that the hospital sector could contribute to setting the standards. It was agreed that the term “guidelines” would be better than “charter”

The Board commented that the project plan is fast pace and that the number of events should be reduced to three.

Action Required:

The DAA Secretariat will amend the plan in light of the comments above

Finance

Update:

Spend and income has continued as expected since February 2015 Board meeting The Department of Health grant is being processed before the election and the Alzheimer’s

Society has committed to continue its £30k grant into 2015/16 No further monies have been committed by members since the last Board meeting The National DAA Secretariat is currently in negotiations with a national member to run a

joint event in June, which the DAA will be paid to organise. This will provide additional resources for 2015/2016 and potentially provide a new model for income generation

Discussion:

The Board agreed that there should be some form of subscription model for membership and that there should be a base level contribution of £250. Although it is important to encourage members who can afford it to give more and to encourage payment in-kind

It was suggested that there could be different levels of membership, priced with a sliding scale – with Gold, Silver and Bronze membership.

Action:

The information about the new subscription model should be communicated to members in the letter about action plan updates

SK and Dan Snipe should word this ask, taking into account VAT implications SK to email a financial report to all board members and to provide a financial report at each

board meeting.

Board Elections

Following the Board’s recommendations the following length of service and election timetable will be circulated to members the w/c 25th May

The following length of terms were pulled out of a hat by the national DAA Secretariat:o 1 year term DAA Affiliate (person with dementia and deputy and carer and deputy)o 2 year term Not for profit sector co-chair o 2 year term Private sector co-chairo 3 year term Research representative o 3 year term Local representative and deputy

Following the completion of these terms it will revert to 3 year terms for all representatives The proposed election process is as follows:

o April – membership list sorted into colleges i.e. private and not for profit sector, research, DAA affiliates and local members (national members already asked to confirm)

o w/c 25th May – members informed of selection process and provided with nomination papers

o Sunday 14th June – deadline for nominationso w/c 15th June – gaining permission from nomineeso w/c 22nd June – voting begins for the Board memberso 11:59pm 5th July – deadline for voting for Board members

o w/c 6th July - results announced to successful candidateso w/c 13th July – new Board members announced to wider DAA membershipo July / August – joint meeting of all outgoing and incoming Board members

Actions:

SK will map out the different terms, as they are difficult to visualise in the form of a list There will be no 1.5 year terms, to avoid having more than one election per year The terms will be one, two or three years long The time period for nominations will be increased and the time period for voting will be

decreased.

A.O.B.

The Board agreed that the next two meetings will be on Friday 5th June and Tuesday 25th August.