Burley in Wharfedale Dementia Action Group
Meeting Minutes 20 April 2017
1. Present Niccola Swan (Chair/Treasurer), Susan Collins (Minutes), Quentin and Eileen Fowler, Sue Jopling, Val and Ken McKenzie, Bernadette Brearton, Jonathan Easby
A special welcome to Quentin and Eileen who were pleased to be with us again after the challenges of recent weeks; also to Jonathan Easby, Home Manager at Burley Hall since January and very keen to engage with BDAG.
Since February a variety of circumstances had affected the running of BDAG, so it was decided to postpone an invitation to Paula Truman, Ward Officer for Wharfedale who is interested in meeting members of the group. Action: Susan to invite her to the May meeting.
2. Apologies Sylvia Bergin, Wendy Carpenter, Judith Sayer
3. Minutes of meeting 23 February Correction : 6c) Budget Susan to apply to Shipley Community Chest and Burley and Menston Civil Charities (not Burley Educational Trust) for grant funding.
Amended and accepted.
Matters Arising
4 e) ‘Don’t Leave Me Now’ play reading – this was discussed at the February meeting and it was agreed that at £750, the cost is prohibitive. On hold for now. Susan had not had chance to enquire how costs were covered for ‘Simeon’s Watch’, another Dementia Awareness drama at the Methodist Church, November 2016. Action: Susan to follow up. Another option worth considering might be to stage this at Ilkley Playhouse.
4. Events and Visits since last meeting
a) Visits to Memory Clubs – Val and Ken, along with Janet Austen who has volunteered to help facilitate our TMT Carers’ Group made a worthwhile visit to TMT @ Shipley. More visits by those interested in volunteering at the Burley Club are encouraged. Time with Elizabeth (Carers’ group) and Bob (Activities) at existing clubs is excellent experience in preparation for our own venture. (Please check with Elizabeth before going.)
b) Information Session Burley Guides, 7 Mar – led by Sylvia. The Guides were very receptive.
c) ‘Alzheimer’s – we can cure it’, 29 Mar, at The Grammar School at Leeds, a public lecture by Dr Sam Cohen is summarised below. Sylvia and Susan attended and suggest that BDAG should consider asking Sam to present an update on his research, maybe in a year or two’s time, in the Burley/Menston/Ilkley area. Sylvia organised an information stall with dementia resources and collected donations. £294.87 for BDAG was a real bonus!
It is 116 years since Alzheimer’s disease was identified, yet it remains one of the biggest medical and social challenges of our generation and we have done little to address it. Speaking to an audience of some 250 people, researcher Dr Sam Cohen explained the background to this lack of progress in tackling Alzheimer’s and outlined the work that he and a team of researchers are doing at Cambridge University. He is a lead author of a study published in 2015 in the journal Nature Structural & Molecular Biology, which identifies a crucial molecule that could slow the accumulation of the protein tangles in the brain that cause Alzheimer’s disease. While this research is unlikely to lead directly to drug development, it can be used as a starting point for investigating possible therapies, which is critical in tackling a disease that affects over 800,000 people in the UK, a number growing rapidly as our population ages, as well as the many who care for them. However Dr Cohen made the point strongly that unless research into Alzheimer’s is prioritised, similar to diseases such as cancer, progress will stall. Cancer researchers in the UK number 23000, while there are less than 3000 Alzheimer’s researchers. He said: “Confusing Alzheimer’s with ageing has cost us decades of research time. Now research like this shows that Alzheimer’s disease is something we can treat and cure, I think there’s finally some hope. But we need help.” “Alzheimer’s patients can’t speak up. Their carers are too worn out to advocate for change. I believe it really is down to us. Together we have to speak up for them and together I’m confident we can find a cure.”
5. Forthcoming Events and Dates
a) Information sessions for businesses and organisations – Niccola has received 2 requests – the Parish Council and the Library Volunteers. Availability of Dementia Champions was discussed and we agreed that we should try to offer 3 sessions, 2 day time, 1 evening, probably May/June. It was noted that the library is closed on Wednesdays, so potentially a good day for those volunteering there. The 2 groups could be combined and by using the Queen’s Hall and/or the library premises, the cost of room hire could be avoided. Bernadette offered to co-ordinate. Action: Bernadette to liaise with other Dementia Champions, Sylvia, Quentin and Becca, and also Niccola. Bernadette knows another Dementia Champion who may be willing to help and it was noted that Paula Truman had also offered to help occasionally if necessary.
In addition Action: Sylvia (on return from holiday) to approach the Co-op and other youth organisations such as DofE, Scouts and Brownies. Susan to follow up on previous approach to Burley Oaks School.
It was agreed not to offer an information session during Dementia Awareness Week (14 -20 May) as we shall be launching TMT on the 18th and have a public event on the 21st. However, Burley Festival (19 – 25 Aug) would provide an excellent platform for a public information session. Action: Susan to contact Sylvia re. her availability, check out potential premises and meet the 9 May deadline for the Festival brochure.
b) Tour de Yorkshire – Sun 30 April – The Alzheimer’s Society is the official charity partner and is asking businesses and organisations to take collection boxes. Road closures in Burley mean that there will be no services at St Mary’s and SSFisherMore RC church. An ecumenical service, 11.00am at the Methodist Church will be followed by a bring and share lunch. Rev. Alastair Kirk has suggested that there will be an opportunity to promote BDAG. It was agreed that we are already heavily committed and do not have capacity to put on anything major, but a small display of information leaflets (and our collection bucket!) would be useful promotion. Action: Susan to investigate possibilities.
c) Bradford University School of Dementia Studies -Tues 9 May, 3-6 2 free public lectures - Professor Ian James: 'Helping Staff Become Aware of their Communication and Interaction Skills in Supporting People with Dementia'. Professor Ann Kolanowski: 'Delirium Superimposed on Dementia: Improving Transitions through Healthcare Settings'. The afternoon also includes an Interactive Dementia Information Session providing an informal opportunity to meet researchers and academics and learn about the work of the School of Dementia Studies. http://www.bradford.ac.uk/health/dementia/doctoral-training-centre/events/
d) Dementia Awareness Week – Sunday 21 May, 2–4 Parish Centre – public event confirmed. Publicity in progress, posters and small flyers to be distributed around the village, Menston and Ilkley. Copies have been submitted to the Parish Council for their newsletter and to all the churches for their respective May magazines. Electronic copy of poster attached. Action: Susan to arrange inclusion in village diary, in 3 church Sunday news sheets, ask Dale Smith to circulate his Menston network, send to Alzheimer’s Society, Shipley for wider circulation and approach the Ilkley Gazette. Niccola to publicise on website and Facebook. Sue J. to publicise on SSFisherMore RC Sunday bulletin. All: to promote this event to ensure a good response. More flyers available from Susan.
The October event worked well, so similar format with refreshments and time to network at the end. Offers of cakes already received from Val, Bernadette, Jonathan and Susan Action: All to please bring a small donation of cake or biscuits, something to use at home if not required. It is difficult to estimate numbers at this stage. Please plan to arrive at 1pm to help set up the room (no caretaker on a Sunday!) and displays. Susan will bring tea/coffee etc.
Until nearer the time, the Alzheimer’s Society cannot say if we shall be able to borrow the big display boards. If available, they will need collecting from Shipley or Keighley, the previous day. Action: Val to liaise with Susan
It was noted that the Alzheimer’s Society will be rebranding, about 3 weeks ahead of Dementia Awareness Week. Watch this space! Any existing stock of leaflets and resources to be used first.
e) Kiss Me, Kate – Ilkley Playhouse – Tues 6 June, 7.30 Ilkley Playhouse is working with local groups and individuals to make this performance Dementia Friendly. This includes having clear visual markers and signage in the building and additional volunteers trained to welcome people living with dementia and their supporters.
Where necessary any technical aspects of the show will be adapted, flexible seating options will be available and there will be an open attitude to movement and audience response within the auditorium.
Email the office at [email protected] or call 01943 609539 for tickets, alternatively BDAG could organise a group booking. Action: All to consider – volunteer needed! Then liaise by email.
e) Burley Summer Festival – 19-26 Aug Sylvia has discussed the idea of incorporating a Memory Walk with Ann Greenhough, of Walkers are Welcome. As there are already a number of walks scheduled during that week, and the logistics of a sponsored Memory Walk would be determined by the Alzheimer’s Society, they came to the conclusion that it would be better to arrange this as a separate event. In order to obtain the relevant resource pack, Sylvia had to stipulate a date, though this could be changed. The provisional date is 10 September. Action: Sylvia to brief BDAG at our May meeting.
f) Coffee Morning - 30 Sept - Action: All to continue collecting tombola prizes!
6. Implementation of Action Plan
a) BDAG Constitution adopted 23 Feb 2017 – now signed by all 4 officers
Bank Account – Niccola reported that Barclays Bank, Ilkley appear to have misplaced our application forms. This is frustrating, not least because we are unable to accept our grant from Shipley Community Chest and it makes it difficult to apply for other funding. Action: Niccola to follow up. Susan to apologise to Shipley Community Chest for the long delay.
b) Fundraising – Susan reported that our application to Shipley Community Chest had been successful and we have been awarded the maximum of £350. The Memorandum of Agreement, signed by Susan on behalf of BDAG, states that this is to be used specifically for the promotion and launch of The Memory Tree @ Burley in Wharfedale. Records of expenditure must be kept and made available for inspection and audit as required. Action: Within 6 months of receiving the grant, evidence must be provided to show that Shipley Area Committee has been recognised and acknowkledged as a funding provider e.g. on our website, in leaflets, in minutes. Also, a short report indicating the benefit derived from the grant – “the inclusion of photographs is welcomed but, where these are of people, specific, signed, permissions should have been obtained for these to be used in future publicity. If you submit photos, please indicate whether such permissions have been obtained and that you have saved these permissions on file.”
Val and Ken’s Office Supplies contact has kindly agreed to provide ink cartridges, paper etc. as required. Action: Val to please thank on behalf of BDAG for this generous offer. Susan to discuss with St Mary’s Parish Office to determine the best way forward re. printing and copying costs.
Other grant applications etc. Action: Susan to apply to Burley and Menston Civil Charities (by 2 July), Niccola to apply to Burley parish Council, Wendy to approach Hobbycraft and ask if her employer might consider helping with printing costs, Lynne to ask if Burley Allotment holders would help by donating seeds and plants.
c) Link with GP Practice – Donna Tollemache, Practice Manager had sent a brief email to Susan and Niccola on 28 March but no further contact. Action: Niccola to follow up re. arranging an Information Session for all Practice staff, also to clarify who is the Lead GP for dementia and which member of admin staff has been designated to liaise with BDAG.
d) TheMemoryTree@Burley – as agreed at the February meeting, to be launched on Thursday 18 May, 2-4pm at the Parish Centre. Thereafter, the 1st and 3rd Thursday of the month. Publicity, policies and procedures ongoing. Action: Susan to progress in conjunction with Elizabeth Anderson and to enlist the help of other BDAG volunteers as necessary.
In line with guidance from Elizabeth, we agreed that in the early stages, we should aim to keep the Club relatively small. We already know of at least 3 couples who plan to attend and Jonathan has identified 2 more Burley Hall residents who would be ideal potential members. Once established, the Club is likely to attract others and we know that the Burley GPs are keen to support us by making referrals.
e) Checklists of local businesses/organisations – Val and Ken continue to make good progress and have visited several premises. The aim is to increase Dementia Awareness and encourage membership of the Dementia Action Alliance, enabling the ‘Working to Become Dementia Friendly’ sticker to be displayed but uptake is slow. Action: Val and Ken to share their spreadsheet of findings with Sylvia who will then offer on-site Information Sessions as appropriate. Meanwhile, we agreed that painting a white strip along the edge of shop steps would be a move in the right direction and welcomed by people with dementia. Action: Val and Ken to approach Judith Collins, Manager at Cohen’s to explore potential for being the first to go ahead, then exploit all publicity options in the hope that other premises would follow!
7. AOB - None
8. Date of Next Meeting – Thursday 25 May 2017, 2pm, Parish Centre.
Meeting Minutes 20 April 2017
1. Present Niccola Swan (Chair/Treasurer), Susan Collins (Minutes), Quentin and Eileen Fowler, Sue Jopling, Val and Ken McKenzie, Bernadette Brearton, Jonathan Easby
A special welcome to Quentin and Eileen who were pleased to be with us again after the challenges of recent weeks; also to Jonathan Easby, Home Manager at Burley Hall since January and very keen to engage with BDAG.
Since February a variety of circumstances had affected the running of BDAG, so it was decided to postpone an invitation to Paula Truman, Ward Officer for Wharfedale who is interested in meeting members of the group. Action: Susan to invite her to the May meeting.
2. Apologies Sylvia Bergin, Wendy Carpenter, Judith Sayer
3. Minutes of meeting 23 February Correction : 6c) Budget Susan to apply to Shipley Community Chest and Burley and Menston Civil Charities (not Burley Educational Trust) for grant funding.
Amended and accepted.
Matters Arising
4 e) ‘Don’t Leave Me Now’ play reading – this was discussed at the February meeting and it was agreed that at £750, the cost is prohibitive. On hold for now. Susan had not had chance to enquire how costs were covered for ‘Simeon’s Watch’, another Dementia Awareness drama at the Methodist Church, November 2016. Action: Susan to follow up. Another option worth considering might be to stage this at Ilkley Playhouse.
4. Events and Visits since last meeting
a) Visits to Memory Clubs – Val and Ken, along with Janet Austen who has volunteered to help facilitate our TMT Carers’ Group made a worthwhile visit to TMT @ Shipley. More visits by those interested in volunteering at the Burley Club are encouraged. Time with Elizabeth (Carers’ group) and Bob (Activities) at existing clubs is excellent experience in preparation for our own venture. (Please check with Elizabeth before going.)
b) Information Session Burley Guides, 7 Mar – led by Sylvia. The Guides were very receptive.
c) ‘Alzheimer’s – we can cure it’, 29 Mar, at The Grammar School at Leeds, a public lecture by Dr Sam Cohen is summarised below. Sylvia and Susan attended and suggest that BDAG should consider asking Sam to present an update on his research, maybe in a year or two’s time, in the Burley/Menston/Ilkley area. Sylvia organised an information stall with dementia resources and collected donations. £294.87 for BDAG was a real bonus!
It is 116 years since Alzheimer’s disease was identified, yet it remains one of the biggest medical and social challenges of our generation and we have done little to address it. Speaking to an audience of some 250 people, researcher Dr Sam Cohen explained the background to this lack of progress in tackling Alzheimer’s and outlined the work that he and a team of researchers are doing at Cambridge University. He is a lead author of a study published in 2015 in the journal Nature Structural & Molecular Biology, which identifies a crucial molecule that could slow the accumulation of the protein tangles in the brain that cause Alzheimer’s disease. While this research is unlikely to lead directly to drug development, it can be used as a starting point for investigating possible therapies, which is critical in tackling a disease that affects over 800,000 people in the UK, a number growing rapidly as our population ages, as well as the many who care for them. However Dr Cohen made the point strongly that unless research into Alzheimer’s is prioritised, similar to diseases such as cancer, progress will stall. Cancer researchers in the UK number 23000, while there are less than 3000 Alzheimer’s researchers. He said: “Confusing Alzheimer’s with ageing has cost us decades of research time. Now research like this shows that Alzheimer’s disease is something we can treat and cure, I think there’s finally some hope. But we need help.” “Alzheimer’s patients can’t speak up. Their carers are too worn out to advocate for change. I believe it really is down to us. Together we have to speak up for them and together I’m confident we can find a cure.”
5. Forthcoming Events and Dates
a) Information sessions for businesses and organisations – Niccola has received 2 requests – the Parish Council and the Library Volunteers. Availability of Dementia Champions was discussed and we agreed that we should try to offer 3 sessions, 2 day time, 1 evening, probably May/June. It was noted that the library is closed on Wednesdays, so potentially a good day for those volunteering there. The 2 groups could be combined and by using the Queen’s Hall and/or the library premises, the cost of room hire could be avoided. Bernadette offered to co-ordinate. Action: Bernadette to liaise with other Dementia Champions, Sylvia, Quentin and Becca, and also Niccola. Bernadette knows another Dementia Champion who may be willing to help and it was noted that Paula Truman had also offered to help occasionally if necessary.
In addition Action: Sylvia (on return from holiday) to approach the Co-op and other youth organisations such as DofE, Scouts and Brownies. Susan to follow up on previous approach to Burley Oaks School.
It was agreed not to offer an information session during Dementia Awareness Week (14 -20 May) as we shall be launching TMT on the 18th and have a public event on the 21st. However, Burley Festival (19 – 25 Aug) would provide an excellent platform for a public information session. Action: Susan to contact Sylvia re. her availability, check out potential premises and meet the 9 May deadline for the Festival brochure.
b) Tour de Yorkshire – Sun 30 April – The Alzheimer’s Society is the official charity partner and is asking businesses and organisations to take collection boxes. Road closures in Burley mean that there will be no services at St Mary’s and SSFisherMore RC church. An ecumenical service, 11.00am at the Methodist Church will be followed by a bring and share lunch. Rev. Alastair Kirk has suggested that there will be an opportunity to promote BDAG. It was agreed that we are already heavily committed and do not have capacity to put on anything major, but a small display of information leaflets (and our collection bucket!) would be useful promotion. Action: Susan to investigate possibilities.
c) Bradford University School of Dementia Studies -Tues 9 May, 3-6 2 free public lectures - Professor Ian James: 'Helping Staff Become Aware of their Communication and Interaction Skills in Supporting People with Dementia'. Professor Ann Kolanowski: 'Delirium Superimposed on Dementia: Improving Transitions through Healthcare Settings'. The afternoon also includes an Interactive Dementia Information Session providing an informal opportunity to meet researchers and academics and learn about the work of the School of Dementia Studies. http://www.bradford.ac.uk/health/dementia/doctoral-training-centre/events/
d) Dementia Awareness Week – Sunday 21 May, 2–4 Parish Centre – public event confirmed. Publicity in progress, posters and small flyers to be distributed around the village, Menston and Ilkley. Copies have been submitted to the Parish Council for their newsletter and to all the churches for their respective May magazines. Electronic copy of poster attached. Action: Susan to arrange inclusion in village diary, in 3 church Sunday news sheets, ask Dale Smith to circulate his Menston network, send to Alzheimer’s Society, Shipley for wider circulation and approach the Ilkley Gazette. Niccola to publicise on website and Facebook. Sue J. to publicise on SSFisherMore RC Sunday bulletin. All: to promote this event to ensure a good response. More flyers available from Susan.
The October event worked well, so similar format with refreshments and time to network at the end. Offers of cakes already received from Val, Bernadette, Jonathan and Susan Action: All to please bring a small donation of cake or biscuits, something to use at home if not required. It is difficult to estimate numbers at this stage. Please plan to arrive at 1pm to help set up the room (no caretaker on a Sunday!) and displays. Susan will bring tea/coffee etc.
Until nearer the time, the Alzheimer’s Society cannot say if we shall be able to borrow the big display boards. If available, they will need collecting from Shipley or Keighley, the previous day. Action: Val to liaise with Susan
It was noted that the Alzheimer’s Society will be rebranding, about 3 weeks ahead of Dementia Awareness Week. Watch this space! Any existing stock of leaflets and resources to be used first.
e) Kiss Me, Kate – Ilkley Playhouse – Tues 6 June, 7.30 Ilkley Playhouse is working with local groups and individuals to make this performance Dementia Friendly. This includes having clear visual markers and signage in the building and additional volunteers trained to welcome people living with dementia and their supporters.
Where necessary any technical aspects of the show will be adapted, flexible seating options will be available and there will be an open attitude to movement and audience response within the auditorium.
Email the office at [email protected] or call 01943 609539 for tickets, alternatively BDAG could organise a group booking. Action: All to consider – volunteer needed! Then liaise by email.
e) Burley Summer Festival – 19-26 Aug Sylvia has discussed the idea of incorporating a Memory Walk with Ann Greenhough, of Walkers are Welcome. As there are already a number of walks scheduled during that week, and the logistics of a sponsored Memory Walk would be determined by the Alzheimer’s Society, they came to the conclusion that it would be better to arrange this as a separate event. In order to obtain the relevant resource pack, Sylvia had to stipulate a date, though this could be changed. The provisional date is 10 September. Action: Sylvia to brief BDAG at our May meeting.
f) Coffee Morning - 30 Sept - Action: All to continue collecting tombola prizes!
6. Implementation of Action Plan
a) BDAG Constitution adopted 23 Feb 2017 – now signed by all 4 officers
Bank Account – Niccola reported that Barclays Bank, Ilkley appear to have misplaced our application forms. This is frustrating, not least because we are unable to accept our grant from Shipley Community Chest and it makes it difficult to apply for other funding. Action: Niccola to follow up. Susan to apologise to Shipley Community Chest for the long delay.
b) Fundraising – Susan reported that our application to Shipley Community Chest had been successful and we have been awarded the maximum of £350. The Memorandum of Agreement, signed by Susan on behalf of BDAG, states that this is to be used specifically for the promotion and launch of The Memory Tree @ Burley in Wharfedale. Records of expenditure must be kept and made available for inspection and audit as required. Action: Within 6 months of receiving the grant, evidence must be provided to show that Shipley Area Committee has been recognised and acknowkledged as a funding provider e.g. on our website, in leaflets, in minutes. Also, a short report indicating the benefit derived from the grant – “the inclusion of photographs is welcomed but, where these are of people, specific, signed, permissions should have been obtained for these to be used in future publicity. If you submit photos, please indicate whether such permissions have been obtained and that you have saved these permissions on file.”
Val and Ken’s Office Supplies contact has kindly agreed to provide ink cartridges, paper etc. as required. Action: Val to please thank on behalf of BDAG for this generous offer. Susan to discuss with St Mary’s Parish Office to determine the best way forward re. printing and copying costs.
Other grant applications etc. Action: Susan to apply to Burley and Menston Civil Charities (by 2 July), Niccola to apply to Burley parish Council, Wendy to approach Hobbycraft and ask if her employer might consider helping with printing costs, Lynne to ask if Burley Allotment holders would help by donating seeds and plants.
c) Link with GP Practice – Donna Tollemache, Practice Manager had sent a brief email to Susan and Niccola on 28 March but no further contact. Action: Niccola to follow up re. arranging an Information Session for all Practice staff, also to clarify who is the Lead GP for dementia and which member of admin staff has been designated to liaise with BDAG.
d) TheMemoryTree@Burley – as agreed at the February meeting, to be launched on Thursday 18 May, 2-4pm at the Parish Centre. Thereafter, the 1st and 3rd Thursday of the month. Publicity, policies and procedures ongoing. Action: Susan to progress in conjunction with Elizabeth Anderson and to enlist the help of other BDAG volunteers as necessary.
In line with guidance from Elizabeth, we agreed that in the early stages, we should aim to keep the Club relatively small. We already know of at least 3 couples who plan to attend and Jonathan has identified 2 more Burley Hall residents who would be ideal potential members. Once established, the Club is likely to attract others and we know that the Burley GPs are keen to support us by making referrals.
e) Checklists of local businesses/organisations – Val and Ken continue to make good progress and have visited several premises. The aim is to increase Dementia Awareness and encourage membership of the Dementia Action Alliance, enabling the ‘Working to Become Dementia Friendly’ sticker to be displayed but uptake is slow. Action: Val and Ken to share their spreadsheet of findings with Sylvia who will then offer on-site Information Sessions as appropriate. Meanwhile, we agreed that painting a white strip along the edge of shop steps would be a move in the right direction and welcomed by people with dementia. Action: Val and Ken to approach Judith Collins, Manager at Cohen’s to explore potential for being the first to go ahead, then exploit all publicity options in the hope that other premises would follow!
7. AOB - None
8. Date of Next Meeting – Thursday 25 May 2017, 2pm, Parish Centre.