## **2020-2021 Annual Trustee Report** **Living Better with Dementia YOUNGER PEOPLE WITH DEMENTIA (BERKSHIRE)** Trustees’ Annual Report for Charity Commission: 1171720 # **ANNUAL REPORT FOR CHARITY COMMISSION (1 April 2020 to 31 March 2021)** ## **Introduction and purpose** The charity’s purpose is to operate across Berkshire supporting carers of people diagnosed with young onset dementia and their loved one with young onset dementia, helping them to live well after diagnosis. Young onset dementia affects adults between the ages of 30-64. It has a reported prevalence rate of between 54 and 260 cases per 100,000 and nationally there are about 42,000 younger people with dementia. In Berkshire alone there are estimated to be more than 500 people living with young onset dementia (based on Delphi consensus Dementia UK Update 2[nd] Ed 2014). The traditional support services provided for those with dementia are designed to meet the needs and expected therapeutic outcomes of older adults and subsequently, access to activities appropriate for younger adults with dementia continues to be limited locally, regionally and nationally. The YPWD model encourages carer respite throughout the working week, giving all carers the chance to take a break. In a national study focusing on post-diagnostic support for those living with young onset dementia and their carers The Angela Project reported that 69% of carers reported there was no service that provided care for their relative to allow them to take a break[1] . The charity’s model is integrated with local healthcare provision meaning that there is, to the patient and carer, a seamless service from diagnosis to referral into the charity, to Admiral Nurse and Dementia Care Advisor to local memory clinic. This model reflects several key needs that The Angela Project highlighted for people with young onset dementia including access to young onset specific advice, information and support to remain independent, supported age-appropriate activity, support to maintain physical and mental health as well as possible[2] . Our integrated model has developed through an ongoing open dialogue with health and social care professionals to champion the needs of those with young onset dementia and their carers. As a result of the charity’s services, and the integration with health and social care significant savings have been made on healthcare budgets because of reducing health crises in patients and carers and delaying entry into care. Key recommendations from The Angela Project relating to service design and development cited both the need to build capacity and ownership of young onset dementia services within, and between, organisations and to provide specialist or shared care, rather than care from a GP alone[3] . > 1 Angela Project team, ‘Good Practice in Young Onset Dementia: improving diagnosis and support for younger people with dementia – Results from the Angela Project – a study on young onset dementia’, Young Dementia Network, March 2020, TAP---Good-Practice-in-YOD-document-FINAL.pdf (bradford.ac.uk), p7 > 2 Angela Project team, ‘Good Practice in Young Onset Dementia: improving diagnosis and support for younger people with dementia – Results from the Angela Project – a study on young onset dementia’, Young Dementia Network, March 2020, TAP---Good-Practice-in-YOD-document-FINAL.pdf (bradford.ac.uk), p8 > 3 Angela Project team, ‘Good Practice in Young Onset Dementia: improving diagnosis and support for younger people with dementia – Results from the Angela Project – a study on young onset dementia’, Young Dementia Network, March 2020, TAP---Good-Practice-in-YOD-document-FINAL.pdf (bradford.ac.uk), p8 2 Trustees’ Annual Report for Charity Commission: 1171720 ## **Our response to the pandemic** Throughout this reporting period the charity was operating in a global health pandemic. Our objective has been to continue to maintain contact with carers and their loved ones living with a young onset diagnosis as safely as possible, and to provide meaningful services that will alleviate isolation and loneliness while operating within government guidelines. To do this we moved our services online and onto the telephone, we provided regular activity boxes, and when we were able to, we offered face to face services. More detail of our pandemic services and impact are on page seven. We felt it was important to highlight the feelings that some people have expressed to us directly about our support during this pandemic and the impact it has had on them in the past year: _“All workshops have been greatly received and the team are constantly trying new things. Taking into account the problems people with dementia have when trying the zoom workshops. There has been a good variety of workshops and our loved ones would have been lost without them and so would their carers.”_ **Carer** _“In my opinion YPWD do a fantastic job of trying to engage the person with Dementia (whatever stage they are at). It is great to know they are there at the end of the phone too if you need someone. In the first 3 months we have only been taking zoom calls with one other from YPWD which we have looked forward to. Has been a lot of fun. Don't know what we would do without them. Thank you.”_ **Carer** _“YPWD zoom sessions have provided a very welcome routine and focal point to our week - a regular 'social event' in very lonely and difficult times. Thank you for keeping us connected and able to interact with others 'in the same boat’.”_ **Carer** 3 Trustees’ Annual Report for Charity Commission: 1171720 ## **Key charity information** The Trustees of YPWD (Berkshire) CIO present their annual report and audited accounts for the year ended 31 March 2021 and confirm they comply with the requirements of the Charities Act 2011, the trust deed and the Charities SORP (FRS 102). ## **Charity name:** **Registered charity number:** **Charity’s principal address:** Younger People With Dementia (Berkshire) CIO 1171720 Indigo House, First Floor, Unit 9, Fishponds Road, Wokingham, RG41 2GY ## **Trustees:** Ms Lisa Mooney Mrs Kathy Taylor Dr Jacqueline Hussey Mrs Caroline Blanchette Mr David Fisher Dr Buchi Reddy Mrs Alison Richardson Mr Peter Watson Mr Alain Wilkes Chair of Trustees Resigned 30 September 2020 Resigned 16 March 2021 Vice Chair ## **Bankers:** **Independent Examiner:** **Staffing and volunteers:** HSBC, 160 Crockhamwell Road, Woodley, Berkshire RG5 3JJ Sue Jackson FCCA, CTA (Working Numbers Ltd) Six full-time staff Five part-time staff One clinical consultant (sitting on the board) One Public Health consultant (sitting on the board) Seven volunteers (including seven Trustees) 4 Trustees’ Annual Report for Charity Commission: 1171720 ## **Finances, Governance, Structure and Management** ## **Financial Year** The twelve months to 31 March 2021 have been challenging as a result of the covid-19 pandemic. Specifically, this left the charity without the option to raise funds through business support or event challenges, leaving a projected deficit in our budget. We initiated a trust and foundation application strategy that led to the closure of this deficit. At year end our reserves had increased by £100K. The expenditure of the charity is mainly comprised of Staff costs and Premises with a reduction in expenditure on activity as all services moved online for the year. ## **Our Finances: income and expenditure** The total income for the charity was: £422,222 with the total expenditure coming to £311,437. ## **Reserves Policy** The reserves policy of the charity is to maintain unrestricted funds, which are the free reserves of the charity, at a sufficient level which enables the charity to operate in the short term (6 Months). The remainder of the Charity's reserves are distributed in accordance with its objectives. The total reserves at the year-end date were £465,390 of which an amount of £185,255 was held in restricted funds. The trustees consider the state of the charity to be satisfactory, and that it is achieving its objectives. ## **Governing Document** The charity is controlled by its governing document. ## **Recruitment and appointment of Trustees** The charity must appoint a minimum of six trustees. Apart from the first charity trustees, every trustee must be appointed for a term of three years by a resolution passed at a properly convened meeting of the charity trustees. Trustees must have regard to the skills, knowledge and experience needed for the effective administration of the CIO. Trustees are co-opted to the board by a quorum of at least four trustees. The trustees give their time voluntarily and receive no benefit from the Charity. ## **Risk Management** The trustees have a duty to identify and review the risks to which the charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error. The Trustees recognise the charity’s reliance on the NHS for Funding and actively look to broaden the sources of financial support. In this difficult year the charity has been able to raise a significant proportion of its funds from charitable trusts and foundations. ## **Covid-19** The charity has reviewed and adjusted its working practices to provide services throughout the pandemic. The charity has worked closely with funders to ensure their continued support. Keeping staff and clients safe has been the trustees’ primary consideration during this period and planning is ongoing to ensure a safe return to work later in 2021. The charity has not used the government’s furlough scheme and retained all staff on full pay. 5 Trustees’ Annual Report for Charity Commission: 1171720 ## **Management** The charity is run on a day-to-day basis by the Charity Director, who reports directly to the Chair of Trustees. Charity services are overseen by the Services Delivery Manager, who reports to the Charity Director and services are delivered by a team of Young Dementia Project Workers across Berkshire. 6 Trustees’ Annual Report for Charity Commission: 1171720 ## **Description of Services Offered during the Covid-19 pandemic** During the pandemic we moved our entire operation online and developed a range of services and support throughout the year which continued to engage people living in Berkshire with young onset dementia. Our services usually run in six-week blocks, seven times a year. In between are break weeks where our team of Young Dementia Project Workers plan the next block of services, undertake training and take their leave. From April 2020 to September 2020 the charity provided weekly services only initiating the six-week services model during September. This was as a result of the extraordinary times that we were operating in and was a commitment on the part of the charity to make sure all our vulnerable clients continued to be engaged. ## **Live Video Workshops (online)** Before the pandemic our workshop services were run throughout the working week at locations in local communities across Berkshire. Workshops are selected based on current evidence of therapeutic benefit, following requests specifically by people with dementia and from carers’ feedback. This approach instils confidence in the carer that their loved one will be engaged in meaningful activity, thus reducing anxiety when leaving them. This provides beneficial respite for carers and provides improved outcomes for people with dementia, including positive mental health and wellbeing. As a result of the first national lockdown, it meant that operating physically was going to be impossible. With that in mind our team initiated live, online video workshops within the first two weeks. Examples of the range of online workshops offered include: - Wildlife in the Garden - Choir - Art - Well-Being and Massage - Reader Group - Windsor Castle (collaborating with Royal Collection Trust) - Taster sessions (including – calligraphy, Zumba and film club) - Musical Reminiscence - Hark Back to the 1970s - Exercise and Meditation - Dogs for Good - Reminiscence with the Museum of English Rural Life ## **Telephone calls for carer support** The launch of this service happened within the first week. Our team were given their own list of carers to contact either on a weekly or fortnightly basis. This was an opportunity to offer carers an ear to listen, and a chance to break up their day even if for only an hour. Our team were able to identify any problems and report to colleagues in other services if there was concern. The carer lists were regularly changed so that the team and carers were able to have fresh conversations with different people every few weeks. 7 Trustees’ Annual Report for Charity Commission: 1171720 ## **1:1 Support and garden visits** As the lockdown restrictions were eased on and off during the year the charity was able to provide garden visits to clients and carers. These visits usually lasted up to 90 minutes and involved a member of team meeting the client and carer in their garden, socially distanced. We provided 1:1 sessions too (which included hour long walks) with those people with dementia that were happy to participate. These sessions involved a member of team walking with the person with dementia around the local area. As parks re-opened during the year these sessions were then moved to parks and open spaces. In addition to these services, we also provided 1:1 live video calls to those with dementia who did not want to engage in the live video workshops. ## **Activity packs** Throughout the year we offered our carers activity packs. These were popular during the lockdown periods, and particularly during the first lockdown. The packs contained a range of amenities including games, jigsaws, colouring, quiz books and treats to help ease the challenge of being indoors for so long. In the phone calls to carers our team were able to offer new amenities, and these were delivered or sent by post. At Christmas in 2020 and Easter in 2021 the team created festive packs for all carers and clients and distributed them across Berkshire. ## **Pre-recorded workshops** To be able to alleviate the challenge of lockdown outside office hours a number of team members prerecorded a range of workshops/activities and uploaded them to our YouTube channel. These were then highlighted to carers during the regular calls and links provided in email campaigns during the first lockdown. Examples of some of the pre-recorded workshops include: - Poetry - Art - Movement and exercise - Hand and arm massage - Life in the garden - Baking - Rhythm and music - The Night Sky 8 Trustees’ Annual Report for Charity Commission: 1171720 ## **Impact on those with dementia and their carers as a result of using our services** Throughout the year we regularly ask carers who support their loved one with young onset dementia to complete a short survey to inform the charity about the quality if its services and support. The findings below represent feedback in March 2021 a year after the pandemic services were put into place, and as we were coming out of the third national lockdown. 9 Trustees’ Annual Report for Charity Commission: 1171720 ## **Objectives set for the year** We continued to deliver our five-year strategy during this challenging year, focusing on the following key areas: - Raise awareness, provide education and training - Increase diagnosis and referral rates of young onset dementia - Meet changing needs: work with BAME communities in the east of the county, provide rarer dementia support - Provide greater income diversity: - Progress the ‘tailored pathway’ for the people we support with a diagnosis of young onset dementia 10 Trustees’ Annual Report for Charity Commission: 1171720 ## **Achievements during the period reported against our objectives** ## **Raise awareness, provide education and training** During the year we furthered our commitment to digital communications and established a plan of action for social media leading to an increase of 60% in the numbers of people following the organisation through Facebook, Twitter and Instagram against the previous year. This action plan included commitment to regular posting and focusing on human interest as a theme to engage a broader audience with our work. In addition to the development of our social media we also made the decision to send our digital newsletters monthly, rather than every other month. We did this to be able to reduce the size of the newsletter to make it more appealing, and to be able to have more regular contact with our subscribers. As part of our planning following the impact of the pandemic, it had been recognised that the charity should embrace digital platforms to raise funds. To do this we focused on using Facebook and YouTube to host an online concert (in lieu of our annual Christmas concert) that live streamed on each platform to encourage donations through these channels. A combined result from the digital output listed above to raise awareness of the organisation led to a 66% year on year increase in the number of people searching for the charity on Google. An agreement was made in the year to commit the charity to build a new website and to agree to ongoing technical web support from a professional web development company. A new site will improve the charity’s presence on Google, which in turn will increase traffic to the site further, and the user experience too. The current website had become visually unappealing and from a technical perspective was difficult for staff to maintain without professional support, it was also unsecure and the platform it had been built on was out of date. A small working group involving staff, trustees, carers and the web developer was established to plan and deliver the new site. In collaboration with the Wokingham Memory Clinic, we pioneered the development, build and delivery of an online Understanding Dementia course specifically for people recently diagnosed with young onset dementia from across Berkshire. Our talented team, and colleagues from health and social care hosted weekly, online sessions for the person with dementia with the schedule including four sessions: _Getting to Know Each Other, Understanding Your Symptoms, How Others Can Support You_ and _How to Look After Yourself._ A total of nine people signed up to participate. As a result of our new way of delivering services the YPWD team embraced the opportunity throughout the year to provide engaging and meaningful content. This involved the collaboration with a number of other organisations to be able to do this. A few of these include the Dogs for Good charity, the Museum of English Rural Life, Waltham Place, musician Arthur Brown, author Jamie Stonebridge and Royal Collection Trust. There was a willingness from all those involved to create something enjoyable and relevant for our audience, while also creating the opportunity to make what was being done sustainable. With that in mind the work with Royal Collection Trust (RCT) led to the development of RCT online resources for people with dementia and schools giving them the chance to reach audiences even though Windsor Castle was closed to the public. The outcome of collaborating with Jamie Stonebridge was the development of a dedicated puzzle and games compendium for people with young onset dementia, with Jamie donating half the profit from each sale to YPWD. In October the BBC Radio Berkshire Breakfast Show focused on YPWD throughout the programme, with the aim to raise awareness among the audience of young onset dementia, while also highlighting 11 Trustees’ Annual Report for Charity Commission: 1171720 the support that continued to be offered during the pandemic from a local charity. We were especially grateful to three of our carers and three of our people diagnosed with young onset dementia who participated in the show by being interviewed very early in the morning. Towards the end of the year the charity was nominated for a Berkshire High Sheriff Award, eventually being shortlisted in the category of ‘Supporting the Isolated’ during the pandemic. While we didn’t win, the recognition alone from the shortlisting was a huge acknowledgement of the commitment and hard work of our team. Following many months of discussion and planning the charity were awarded funding by the Frimley CCG to launch a 12-month pilot service for people living in Surrey Heath with a young onset dementia diagnosis. This began in November 2021, and it has been warmly received, and had an enormous amount of interest. ## **Increase diagnosis and referral rates** We maintained membership and regular meetings of the YPWD Network Forum throughout the year. This forum brings together representatives from the six Berkshire localities, including memory services, dementia care advisors and Admiral Nurses. It offers a platform to be able to share good practice and to make sure that patients living with young onset dementia and their families are receiving an equitable service regardless of where they live in Berkshire. In year one of the senior members of team from Berkshire Healthcare Foundation Trust became chair of the forum. This has given the forum a greater sense of gravitas and has encouraged regular participation and representation from all localities. Towards the end of the year the forum began a review of the current young onset dementia pathway to make sure that it will meet patient and carer needs going forward. This will be fully reported on in our next Annual Report. Throughout the year we continued to engage with colleagues across the six memory clinics in Berkshire. This allows the charity to discuss patients that use our services while also highlighting what we are currently offering. As we were unable to meet face to face the six weekly supervision sessions were hosted on video. Over the year we met 39 times. We were invited to participate in the Berkshire West Dementia Forum. This forum brings together a number of NHS and third sector partners supporting those with dementia and their loved ones in Berkshire West. During the year the forum operated to understand what impact on services the pandemic had had and to hear what services were available. It was an opportunity to share good practice, identify gaps and to look at how services will recover. ## **Meet changing needs: BAME communities, rarer dementia support** We participated in a project being led by the Museum of English Rural Life and Age UK Berkshire, funded by Reading Borough Council to better understand the barriers that the local communities in Reading face when accessing services. Our interest centred on those from BAME communities. As the pandemic progressed the project had to pivot away from physical delivery, eventually using live and pre-recorded video to engage local communities. A key point that came out of the project was that in providing online services it made it much easier for these communities to access them and to feel involved. For those from BAME communities there was an uplift in representation at 10%. We can now use this information to help inform the next stage of our own dedicated project. The charity made contact with Feyi Raimi-Abraham, an entrepreneur who founded the Black Dementia Company as a result of her experience caring for her mother who had a dementia diagnosis. She noticed that there were no materials relevant to the heritage of black people, so she created them. We approached her to ask if she’d be open to participating, in an advisory capacity, as we developed our BAME project plan of action, and she agreed to this. 12 Trustees’ Annual Report for Charity Commission: 1171720 The charity attended the BAME Health Inequalities Event being hosted on live video in July 2020. This brought together a range of organisations (including BHFT) to discuss and offer ideas as to how we could all make sure that BAME groups felt able to access the services on offer. We maintained two rare dementia support groups throughout the year. One group offers support to carers whose loved one is diagnosed with Posterior Cortical Atrophy (PCA), the other group for carers whose loved one is diagnosed with Frontotemporal dementia (FTD). In the February 2021 the FTD support group hosted 25 health and social care professionals onto the session to understand more about this rare dementia. They were given a dedicated presentation by Dr Jacqui Hussey from the Wokingham Memory Clinic and YPWD Trustee. Our small working group continued to develop services for children that have a parent with YOD. This included the identification of an online resource that has now been highlighted to young people called Kooth.com. This live, online service provides dedicated advisors who can support children aged 11 and over with any issues they are currently experiencing. A member of team from Kooth.com also sits on the working group, and our plan going forward will be to develop the knowledge base of the Kooth team to have a broader understanding of young onset dementia and the impact that it has on families. As a result of the pandemic, we launched a private online carer group on Facebook to give carers an opportunity to talk to one another, offer advice and peer support. This has become a well-used resource particularly during the lock downs. To date we have 35 members using the group. ## **Income generation** As has been recognised by the board the charity’s largest contributor of income comes from the two Clinical Commissioning Group contracts each year. The board has recognised the need to identify and utilise new income streams to supplement these contracts. During the pandemic the charity lost a significant level of income as companies furloughed staff, closed-down or moved to home working. This meant that any staff fundraising was unable to take place. Along with this all fundraising challenge events, including marathons, bike rides, walking events were cancelled meaning that there were no members of the public fundraising for YPWD either. In response to this the charity activated a trust and foundation strategy to solicit funds and close the income deficit. This was a definitive shift towards systemising this type of fundraising at YPWD. We collaborated closely with colleagues at Involve Services in Bracknell who were able to identify a range of charitable trusts and foundations for us to approach during the year. The positive news is that we were able to secure grants totalling £144k from 13 different trusts and foundations in the year. This has now given the charity the confidence to continue with this method of fundraising going forward. We also embraced upcycling too and collaborated with a local non-profit organisation called Alzh Place. Alzh Place have made YPWD one of their selected charities and have been upcycling furniture and other products with the income generated being donated to YPWD and other local dementia charities. This will give YPWD a small, but regular income from this organisation. The pandemic also encouraged the charity to identify new ways to embrace digital technology and platforms to raise donations in the year. This included an entirely digital music concert featuring our choir master as she played well-known songs for audiences watching on YouTube and on Facebook. In total 200 people joined online to watch this concert. At the same time members of the YPWD team were on hand on the live chat feature to encourage donations and to highlight facts about young onset dementia. This concert raised £3,000 through Facebook, text and online donations. 13 Trustees’ Annual Report for Charity Commission: 1171720 ## **Progress the ‘tailored pathway’ for the people we support with a diagnosis of Young Onset Dementia** The charity has continued to support people with a young onset diagnosis that are heavily progressed in their dementia. Where able, we have sign posted to other services, however during the pandemic the impact on other services, such as day centres and care facilities, has left many shut down or limiting numbers, this has left many with only YPWD to support them. We continue to collaborate with colleagues across health and social care including Admiral Nurses and Dementia Care Advisors. We have also raised this situation within our regular reports to colleagues in the CCGs. One of the outputs of the YPWD Network Forum during the year has included a review of the pathway that is used by health and social care professionals across the county. To date, all those sitting on this forum have provided feedback about the current pathway to be considered. It is hoped that a final, updated version can be agreed later in the year. The charity initiated a dedicated carer forum for those whose loved ones have progressed to a point where mainstream workshops were no longer viable for them. This forum allowed these carers to express their current situation among an understanding peer group, and to help find solutions for one another where they could. We were also able to share their experiences with one of YPWD’s former trustees, Peter Watson, who very kindly took these experiences to the Dementia Partnership Board that he sits on. Carer group Stronger Together, which is targeted at carers who have a loved one in long-term care, or a loved one who has passed away, put together a photo book to highlight what they do and why they do it to help broaden awareness. Copies of this book have been given to the Admiral Nurse and the charity has a copy to take to workshops and other carer groups once face to face services begin again. 14 Trustees’ Annual Report for Charity Commission: 1171720 **Headline charity statistics for the year** 15 Trustees’ Annual Report for Charity Commission: 1171720 ## **Selected quotes about our services from carers and professionals over the past year** _They have adapted amazingly well and still managed to retain the relationship with N. I am impressed with their innovation and hard work._ ## **Carer** _‘YPWD are an invaluable service. It is extremely beneficial to have a charity that focuses on support for the younger person with dementia. We often receive good feedback from people that attend activities and events. Carers also provide positive feedback on the support offered to them. As an organisation, they are eager to engage with health and social care colleagues to enhance collaborative working and to develop and improve services. Individual workers within YPWD are also approachable, warm and friendly. It is a pleasure to work alongside them’._ ## **Community Mental Health Team** _It has been incredibly reassuring to still be able to link into regular workshops (e.g., Harmony choir) and chat to YPWD staff and other carers (weekly Zoom meetings). At this time even more than usual, contact with others and a sense of routine and belonging have been vital. Huge thanks to you all for your ongoing support!_ ## **Carer** _YPWD is a charity that I recommend to any patients that are appropriate to receive support from them. Their warmth, caring and understanding nature is what makes them stand out from other charities. The staff team are always on hand to provide any advice or support whenever I have needed any for the patients that I refer onto them._ ## **Dementia Advisor** _On behalf of my sister who is diagnosed with vascular dementia. YPWD have been very supportive with sending regular updates via emails and one of their colleagues calls on a regular basis with regards to the well-being of my sister. They have provided excellent support and have taken on board my sister’s interests and very kindly organised sending out some postcards and books, which have been of great interest. On behalf of my sister, I would like to take this opportunity to congratulate YPWD on their outstanding support they have given, not only during the Covid-19 pandemic but since my sister first was introduced to them in 2018._ **Carer** My experience of the YPWD charity is of a very friendly, caring and supportive service to younger people with dementia and their families, as well as to other professionals that partner with them. **Occupational Therapist** 16 Trustees’ Annual Report for Charity Commission: 1171720 YPWD have done an incredible job in these very strange times. They have provided some excellent workshops online which has definitely had an impact on both our moods. To have interaction with others even if it’s not in person is great. I don’t think people understand what a wonderful life-line the charity is, it gives hope to the person with dementia that they can live a happy and fulfilled life with help from the fantastic charity like YPWD and the incredibly dedicated, caring and happy people who work for them. WELL DONE ## **Carer** _The YPWD team has made great efforts to keep continuity during the pandemic and have come up with some innovative and creative measures to do this. As a carer I particularly appreciated the weekly call from a team member, and the use of the excellent Facebook group._ **Carer** _I support people living across the country and in contrast to other local regions I work with, who typically have limited if any services for young people, YPWD provide holistic support, positive riskmanagement, go way above and beyond what is required and truly increase the quality of life of those they work with. As well as excellent multi-disciplinary working which provides cohesion across a range of services_ **Senior Admiral Nurse, Imperial College Healthcare Trust** 17 Trustees’ Annual Report for Charity Commission: 1171720 ## **Future plans for 2021-2022** ## **Working towards service delivery as it was before the pandemic** The board and team are fully committed to providing services as they were before the pandemic. While our outputs have been very strong, there is no doubt that physical services can never be fully replaced by digital services. Our commitment for the next 12 months will continue to be the delivery of our services as the pandemic continues and to realise our strategic plan. ## **Objectives for the year ahead** We are committed to delivering our five-year strategy, our day-to-day work and collaborations to enable those in Berkshire, affected by young onset dementia and their carers and families, to live better with their dementia. The end of forthcoming year and the beginning of the next will see the charity enter its tenth year. We have plans to mark this with distinct fundraising and communications activity. This will be bolstered by the significant foundation work already undertaken through digital during this year. Specifically, we will continue to commit to building on the work already done under the headings below: - To raise awareness, provide education and training - To increase diagnosis and referral rates of young onset dementia - To meet changing needs e.g., work with the BAME communities in the east - To provide greater income diversity - To progress the tailored pathway 18 Charity Registration number 1171720 **Younger People with Dementia (Berkshire) CIO Report and Financial Statements For Period Ending 31 March 2021** ## **Younger People with Dementia (Berkshire) CIO Report and Financial Statements For Period Ending 31 March 2021** ||Page| |---|---| |Contents|1| |Trustee and professional advisors|2| |Report of Trustees|3| |Independent Examiners report|4| |Balance sheet|5| |Statement of Financial Activity|6| |Notes to the Accounts|7| **Page 1** **Younger People with Dementia (Berkshire) CIO Trustees and Professional advisers For 12 Months Ending 31 March 2021** Trustees Ms Lisa Mooney Mrs Kathy Taylor Dr Jacqueline Hussey Mrs Caroline Blanchette Mr David Fisher Dr Buchi Reddy Mrs Alison Richardson Mr Peter Watson Mr Alain Wilkes Chair Resigned 30 September 2020 Resigned 16 March 2021 Vice Chair Registered Office First Floor Unit 9 Indigo House Fishponds Road Wokingham RG41 2GY Bankers HSBC 160 Crockhamwell Road Woodley Berkshire RG5 3JJ Independent Examiner Sue Jackson FCCA, CTA Working Numbers Limited 12 St Mary's Road Mortimer Common RG7 3UE **Page 2** ## **Younger People with Dementia (Berkshire) CIO Report of the Trustees For Period Ending 31 March 2021** ## **Structure, Governance and Management Financial Year** The twelve months to 31 March 2021 have been challenging as a result of the covid-19 pandemic. Specifically this left the charity without the option to raise funds through business support or event challenges, leaving a projected deficit in our budget. We initiated a trust and foundation application strategy that led to the closure of this deficit. At year end our reserves had increased by £100K. Theexpenditure of the charity is mainly comprised of Staff costs and Premises with a reduction in expenditure on activity as all services moved online for the year. ## **Governing Document** The Charity is controlled by its governing document. ## **Recruitment and appointment of Trustees** The Trustees give their time voluntarily and receive no benefit from the Charity. ## **Risk Management** The Trustees have a duty to identify and review the risks to which the charity is exposed and to ensure appropriate controls arein place to provide reasonable assurance against fraud and error. The Trustees recognise the charity's reliance on the NHS for Funding and actively look to broaden the sources of financial support. ## **Objectives and Activities** ## **Charitable objectives and Aims** Young Onset Dementia affects adults under the age of 65 and nationally there are known to be just over 42,000. Traditional services are designed to meet the needs and expected therapeutic out-comes of older adults and subsequently, access to activities appropriatefor younger adults with dementia is limited. The Objective of the charity is to promote and protect the physical and mental health of people diagnosed with early onset dementia and also of their families and carers in the administrative districts of Wokingham, Reading, West Berkshire, Bracknell, Windsor and Maidenhead and Slough through the provision of support, education and general advice. ## **Charitable Activities** As a result of the pandemic and the social restrictions that were put into place the charity adapted quickly and moved all services online and on the telephone. Virtual workshops were offered throughout the working week, calls to carers were offered every one to two weeks and when able (as a result of restrictions changing) the charity provided garden visits and one to one walks. **Workshops -** The Charity offers respite to carers through the provision of a number of different workshops for younger people with dementia throughout the working week. A prospectus of the workshops is produced every few months and people with dementia can access a variety of workshops through the week, thus offering clear choice and a flexible approach to respite for carers. **1:1 support -** People are encouraged to choose an activity that is of personal interest to them that can be carried out with the support of one of our respite workers. ## **Reserves Policy** The reserves policy of the charity is to maintain unrestricted funds, which are the free reserves of the charity, at a sufficient level which enables the charity to operate in the short term (6 Months). The remainder of the Charity's reserves are distributed in accordance with its objectives. The total reserves at the year end date were £465K of which an amount of £185K was held in restricted funds. The trustees consider the state of the charity to be satisfactory, and that it is achieving its objectives. A Detailed Report for Activities in 2021 is available on the Charity Commission site. Signed Lisa Mooney Date 19 January 2022 Page 3 **Younger People with Dementia (Berkshire) CIO Registered Charity no. 1171720** **Independent Examiner's Report For Period Ending 31 March 2021** ## **Responsibilities and basis of report** I report to the trustees on my examination of the accounts of the above charity (“the Charity”) for the year ended 31/03/2021. As the charity's trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”). ## **Independent examiner's statement** I report in respect of my examination of the Charity’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. The charity’s gross income exceeded £250,000 and I am qualified to undertake the examination by being a qualified member of the Association of Chartered Certified Accountants (ACCA). I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect: - the accounting records were not kept in accordance with section 130 of the Charities Act; or - the accounts did not accord with the accounting records; or - the accounts did not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair’ view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. ## _SM Jackson_ SM Jackson ACCA WORKING NUMBERS LIMITED 12 St Mary’s Road Mortimer Common Reading RG7 3UE Date: 17 January 2022 Page 4 ## **Younger People with Dementia (Berkshire) CIO. Balance Sheet As at 31 March 2021** |**Note**
**Fixed Assets**
Tangible Assets
3.
**Total Fixed Assets**
**Current Assets**
4.
Debtors
Cash at bank and in hand
**Total Current Assets**
**Liabilities**
5.
Creditors falling due within one year
**Net Current Assets**
Net Assets
**The Funds of the charity:**
6.
Unrestricted Income Funds
Restricted Income Funds
**Total Charity Funds**|**2021**
**2020**
**£**
**£**
1,954
2,999| |---|---| ||1,954
2,999| ||261
356
464,548
352,099| ||464,809
352,455| ||1,373
848| ||1,373
848| ||| ||463,436
351,607| ||| ||465,390
354,606| ||280,135
286,970
185,255
67,636| ||465,390
354,606| These accounts were approved by the Trustees on 18 Jan 2021 and signed on their behalf by: Signature Lisa Mooney Name Lisa Mooney Date 19 January 2022 **Page 5** ## **Younger People with Dementia (Berkshire) CIO Statement of Financial Activity 12 months ending 31 March 2021** |**Note**
**Income:**
Grants
Donations and Legacies
Activities for generating Funds
Income from Other Charitable activities
**Total Income**
**Expenditure:**
Expenditure on Charitable Activities
Governance Costs
**Total Expenditure**
Net income/(Expenditure)
Movement in Funds
Funds Brought forwards
Total Funds Carried Forward|**Unrestricted**
**Restricted**
**Total Funds**
**Total Funds**
**2021**
**2021**
**2021**
**2020**
**£**
**£**
**£**
**£**
101,635
251,881
353,516
367,444
30,638
36,165
66,803
61,255
1,903
0
1,903
1,086| |---|---| ||~~134,176~~
~~288,046~~
~~422,222~~
~~429,785~~| ||137,579
172,762
310,341
399,144
1,096
0
1,096
549| ||~~138,675~~
~~172,762~~
~~311,437~~
~~399,693~~| ||-4,499
115,284
110,785
30,094
-2,335
2,335 -
-
286,969
67,636
354,605
324,511| ||280,135
185,255
465,390
354,605| **page 6** ## **Younger People with Dementia (Berkshire) CIO Notes to the Unaudited Accounts 12 Months Ending 31 March 2021** ## Note **Accounting Policies** ## 1. Background Younger People with Dementia (Berkshire) Charitable Incorporated Organisation (Charity Number 1171720) was set up In February 2017. This replaced the registered Charity of the same name (Charity number 1147290). ## **2.** Basis of Accounting These accounts have been prepared under the historical cost convention with items recognised at cost or transaction value unless otherwise stated in the relevant note(s) to these accounts. The accounts have been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) (Charities SORP (FRS102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102), and the Charities Act 2011. ## Basis of preparing the Financial statements The Financial Statements have been prepared under the going concern basis. The Charity has secured funding to secure the immediate future of the Charity for the next 18 months to 2 years on this basis Trustees view the Charity as a going concern. ## Incoming resources All Incoming resources are included on the statement of Financial Activities when the Charity is legally entitled to the income and the amount can be quantified. ## Resources expended Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to the category. Where costs cannot be directly attributed to a particular heading they have been allocated to activities on a basis consistent with the use of resources. Irrecoverable VAT is charged as a cost against the activity for which the expenditure is incurred. ## Taxation The Charity is exempt from corporation tax on its charitable activities. ## Fund Accounting Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the Trustees. Restricted Funds can be used for the particular restricted purposes within the objects of the Charity. Restriction arise when specified by the donor or when funds are raised for a particular restricted purpose. ## Fixed Assets Depreciation has been provided on a straight line basis at a rate estimated to write off the value of the asset over its useful life. Office Equipment 4 Years Computer Equipment 4 Years ## **3. Fixed Assets** |**Fixed Assets**|| |---|---| |**Cost**
Cost as at 31st March 2020
Additions during the year
Cost as at 31st March 2021
**Accumulated Depreciation**
Balance as at 31st March 2020
Charge for the year
Balance as at 31st March 2021
**Net book value at 31 March 2021**|**2021**
**2020**
**£**
**£**
4,963
4,560
-
403| ||4,963
4,963| ||1,964
869
1,045
1,095| ||3,009
1,964| ||| ||**£1,954**
**£2,999**| **Page 7** ## **Younger People with Dementia (Berkshire) CIO Notes to the Unaudited Accounts** **12 Months Ending 31 March 2021** |**4.**
**Other Debtors**
Trade Debtors
Prepayments
Other Debtors
**5.**
**Creditors falling due within one year**
Trade Creditors
Other Creditors
Accruals
**_6._**
**Reserves**
As at 1st April 2020
Additions during the year
Expenditure During year
Movement Between Funds
As at 31st March 2021|**2021**
**2020**
£
£
-
50
261
157
0
149
**261**
**356**
**2021**
**2020**
£
£
938
698
-
-
435
150
**1,373**
**848**
**Unrestricted**
**Restricted**
**Total 2021**
**2020**
**£**
**£**
**£**
**£**
286,969
67,636
354,605
324,511
134,176
288,046
422,222
429,787
138,675
172,762
311,437
399,693
-2,335
2,335
-
-| |---|---| ||**280,135**
**185,255**
**465,390**
**354,605**| _7._ ## **Trustees Remuneration and Benefits** During the period the total Trustees Remuneration was £nil (2020:Nil) Trustees Expenses for 2021 were nil (2020: £283) **Page 8**