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Organisation:Engaging DementiaCategory:Medium OrganisationsCharity Reg no. :20033439 CHY 118391. Tell us about the issue(s) this organisation is tackling and why it's important
2. How does your organisation go about tackling these issues?
- Why was the organisation set up? What is it trying to change or do? Why is it important to do this?Engaging Dementia was set up to address the isolation and despair that dementia can bring. Our founder, a Speech and Language Therapist, developed a therapeutic activity for people with moderate to late dementia, which she called Sonas (the Irish word for joy). Research showed the benefits for people with dementia, and we began training people to deliver Sonas sessions. Through education, resources and community activities, we replaced isolation and loneliness with laughter and engagement. We have equipped carers with skills to find the person behind the condition. As research continues to highlight the isolation, loneliness and stigma experienced by families affected by dementia and with 11 people diagnosed every day, our work is needed now more than ever.
3. Tell us about a case where the organisation has made a positive difference.
- Explain your organisation's approach to solving the issues you identified in your previous answer. If it has had to adapt its activities in response to COVID-19, how did it do this?Through education, resources and community activities, we equip carers with skills that have been shown to improve the wellbeing of people living with dementia. Through our online seminars and community-based activities, we raise awareness and understanding of dementia, working with other stakeholders to create a more dementia inclusive Ireland. Having pioneered the first Alzheimer Cafe in 2011, the National Dementia Office (NDO) commissioned us to establish the Irish Dementia Cafe Network. When the COVID-19 crisis hit Ireland, we: • Moved all of our training online • Held free events for family carers and healthcare professionals focused on physical and mental health • Introduced the first virtual dementia cafe to maintain the cafe service and train other cafe groups to run virtual cafes
4. What has the overall impact of this work been and how do you measure it?
- This is your chance to talk about impact in qualitative terms. Provide a case study to illustrate the impact of the organisation’s work. We will accept anonymous case studies if you need to protect the identity of a service user or individuals under 18 years of age. You can include a quote or endorsement if you wish.“When we didn’t have a home, it was our home” Carly first came to an Alzheimer Cafe Donnybrook evening in early 2012. She was upset and distraught. Her partner Owen had young onset dementia, and “no-one had told him the diagnosis”, the first time there was something unspoken between them. Over the next year, Carly came to the monthly Alzheimer Cafe meetings and talked to other carers and healthcare professionals about their experience. Then in 2013 she brought Owen. He immediately enjoyed the cafe, and they came together every month thereafter. She said it was a lifeline for them, and a caring, safe place to talk about dementia. Through the cafe, they got information and advice on how to navigate the healthcare system, where to access support services, and how to handle the myriad of challenges that dementia brings. As their confidence grew, Carly and Owen started doing other activities. They attended Engaging Dementia’s social events in the National Botanic Gardens and Airfield House, where they danced to old time music and enjoyed the outdoors. They became involved in research projects on dementia, and Carly joined the Dementia Carers Campaign Network. Unfortunately Owen’s dementia progressed significantly and he is now in residential care. Carly uses music and touch, reminiscence and sensory activities to bring fun and laughter to their time together. They both often spoke about the transformational impact of the Alzheimer Cafe Donnybrook on their lives.
5. What makes your organisation special?
- How would you describe the overall impact of your organisation’s work? What measures do you use to know if you have been successful at achieving your goals? How do you know what to improve or change in your work? Please include as much evidence as possible to demonstrate your impact.Although we are a small organisation, the extent of our reach is quite large, with more than 2000 people trained by us in the last four years. We measure our impact and success by the numbers of people we train, the reach of our educational events, the attendance at our family events, and the development of the Irish Dementia Cafe Network. In order to improve our work, we invite attendees of our events to submit feedback via surveys or to contact us directly. Numbers of health and social care professionals trained in 2019/2020 to date: 229 Sonas programme 173 Sonas Licence Renewals 25 Meaningful 3-Step Activities Plan Workshop 17 Cognitive Stimulation Therapy Workshop 18 Dementia Friendly Gardening Workshop 19 Life Story Boards In response to COVID-19, we delivered a series of free webinars in June and July 2020. The topics explored included ‘Resilience’ (240 attendees), At Home Activities with Emma O’Brien, Occupational Therapist (42 attendees), and Mental Health First Aid, Donal Scanlan (48 attendees). Attendees varied from health and social care professionals (50-70%) to family carers and researchers. We used polls during these sessions to see whether attendees enjoyed the session with 100% of attendees saying they would attend again. We anticipate an attendance of at least 200 people at our Virtual 12th International Dementia Conference, which had to be postponed and adapted when COVID-19 struck, but has been rescheduled for the 2nd & 3rd November, 2020.
6. How can the public support your work?
- What is the organisation’s unique selling-point? What makes the organisation different from others working in the same field/area?Engaging Dementia is unique as we are completely focused on communication, joy and wellbeing. We emphasise retained skills and abilities rather than deficits or disabilities. We promote the value of engagement through communication, music, the senses, the creative arts and the outdoors. Turning our vision into a reality has been possible through building competency and capacity among carers, be they in the hospital or in the family home, and healthcare providers, to deliver person centred dementia care. While there are other organisations that support care needs for people with dementia and carers, no other organisation has a focus on joy and wellbeing. We have a strong track record as an educator and innovator. Being a small organisation means that we can be dynamic and flexible.
7. Describe how your organisation is transparent and accountable
- Do you need volunteers? Do you fundraise? Can the public share your story? Give them a call to action.Research shows that almost every person in Ireland is touched by dementia. It may be a parent, neighbour or friend. Consider who in your life is living with dementia or has a family member with dementia. You can play a role in bringing inclusion and engagement into their lives. Share our activities on social media. We signpost resources and events that upskill carers or bring social activities into people’s homes. Find your local dementia cafe and get involved or set up one in your locality. Engaging Dementia is currently finishing a dementia cafe toolkit and will be holding How to set up a dementia workshops this Autumn. Be a part of making Ireland an inclusive, welcoming place for people with dementia and their families.
- For example, do you publish your annual accounts online? Are you compliant with the Charities Regulator's Charities Governance Code? Do you use the Charities Regulator’s Fundraising Principles?Engaging Dementia is compliant with the Charities Regulator’s Governance Code, the code of practice for good governance of community, voluntary and charitable organisations in Ireland. It abides by the Charities Regulator’s Guidelines for Charitable Organisations on Fundraising from the Public. Engaging Dementia ensures that all fundraising is in line with these guidelines, and has adopted internal policies and procedures to ensure this. Engaging Dementia publishes its annual accounts online (please note that our 2019 independently audited accounts are in the final stages of audit and will be published by end October 2020). It also ensures that its procedures are in line with GDPR regulations.