National Dementia Action Alliance Newsletter June 2019

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This month the NDAA Secretariat would like to say goodbye and good luck to Martin Fewster who left us last week. We look forward to welcoming back Renee Arceo from her maternity leave during the summer. In the meantime, we will be without a Communications Officer so we do ask that you bear with us during this time please!

Please contact us below if you would like to contribute to a future edition of the newsletter.

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APPG on Dementia publishes new report ‘Hidden no more: Dementia and disability’

This week, the All Party Parliamentary Group on Dementia, supported by Alzheimer’s Society, launched the ‘Hidden no more: Dementia and disability’ report. It explores whether people identify dementia as a disability and whether they are having their disability rights met.

The report reveals that, despite dementia being recognised as a disability in legislation (Equality Act 2010 and UN Convention on the Rights of Persons with Disabilities), people are not having their disability rights met – 98% of respondents think that people living with dementia are treated differently to other disabled people.

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NDAA Webinar Series: Dementia in BAME Communities

Join the National Dementia Action Alliance on Tuesday 25 June at 11am for a one hour webinar exploring dementia in BAME communities. Hosted by Shahid Mohammed from tide (Together in Dementia Everyday), this webinar will discuss the main challenges people living with dementia and carers from BAME communities face. Shahid is the Project Manager of the Dementia Dekh Bhaal project, led by tide and hosted by NDAA member Life Story Network, and was originally commissioned by Rochdale Council. The webinar will explore the key learnings from the project, looking at South Asian carers in Rochdale, as well as how these learnings can be taken forward into practice.
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Event: How the integration of hospitals and care home services can better facilitate transfers of care

Join us on Wednesday 17 July at the Royal College of Occupational Therapists, London, for our event ‘How the integration of hospitals and care home services can better facilitate transfers of care’. It is an opportunity to hear from those with lived experience of dementia about the challenges they face when transferring between care home and hospital settings. Hear about existing initiatives that are working to ease pressures on the system and contribute positively in this area. By bringing hospitals and care homes together, we will also develop some key recommendations to facilitate successful partnership working between the two moving forward. We do hope you’ll be able to join us. All NDAA members and hospitals signed up to the Dementia Friendly Hospitals Charter are welcome to join and the event will be of particular interest to:

  • Care homes
  • Hospitals
  • Technology organisations

The day will be chaired by Graham Stokes, Director of Memory Care Services, HC-OneSpeakers confirmed so far include:

  • Martin Green, Chief Executive, Care England
  • Jo James, Lead Nurse for Dementia, Imperial College Healthcare NHS Trust
  • Jennifer Bloor, Operations Manager, Housing 21
  • Carolyn Piper, Dementia Project Manager, Enfield Care Home Assessment Team, North London Partners in Health and Care
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Dementia Action Week 2019 Member Roundup

NDAA members marked Dementia Action Week (20-26 May) 2019 in a variety of ways.  See a roundup of this year’s activity from a selection of our members:

  • Beth Britton
  • Birdie
  • Hallmark Care Homes
  • Step Change Design
The NDAA’s Dementia Friendly Hospitals Charter poster was well received by those signed up to the Charter. Lots of hospitals engaged with us on Twitter during DAW posting photos of them proudly displaying their posters.  
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Dotty Days – Lewy Body Dementia Awareness Week

The Lewy Body Society held its annual awareness week from 1st-8th June. The week is named after the charity’s Patron June Brown MBE, who plays the character Dot Cotton in Eastenders, and whose husband Robert Arnold died with the disease. Dotty Days is a chance to raise awareness of Lewy body dementia, celebrate those affected by the disease, and to encourage everyone to support and participate in dementia research. This year marks 13 years since the charity was founded, and since then it has funded over £1 million in grants to researchers seeking to better understand Lewy body dementia.
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NDAA supports writing of article in Diva magazine

As part of our campaign From Seldom Heard to Seen and Heard, the NDAA has been carrying out work on dementia within the LGBT+ community. We have spoken at events, members’ meetings, and a university lecture; ran webinars; helped a person with dementia create an LGBT+ dementia network; published recommendations; ran a survey; and written blogs. You can see our work on Twitter using the hashtag #dementiaseenandheard

Our most recent piece of work is an article in Diva – Europe’s leading lesbian magazine – where three people who have supported our work on dementia within the LGBT+ community shared their stories. 

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ARUK launches VR dementia training

A new training resource, launched last week by Alzheimer’s Research UK and Bournemouth University, uses virtual reality to help healthcare professionals improve their understanding of the symptoms and challenges of dementia, and to help them develop enhanced relationships with people with the condition. The project was generously supported by Legal & General.

The Lived Experience of Dementia aims to enhance empathy and increase understanding of the lesser-known symptoms of dementia by enabling healthcare professionals to experience the everyday challenges faced by people living with the condition through innovative VR technology. The first 1,000 training packs will be free to order from the charity’s website.

The resource is built around Alzheimer’s Research UK’s groundbreaking A Walk Through Dementia virtual reality app. The free app uses computer-generated environments and 360° video sequences to illustrate in powerful detail the symptoms and difficulties faced by people with dementia.

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Arts 4 Dementia Conference

Arts 4 Dementia (A4D) held the first UK conference on social prescribing for the dementias at the Wellcome Collection in London on 16 May, with a key policy debate and presentations by leaders in social prescribing, arts for health and social care, to drive forward direction to arts on diagnosis.

This year 225,000 people will develop a dementia – one every three minutes. There is no cure, but widespread evidence that engaging with arts and heritage helps protect against the risk of cognitive decline and empowers individuals and their carers to override anxieties caused by dementia, develop new creative experiences, preserve speech and language skills and nurture resilience in the community, despite dementia.

On diagnosis of a dementia, people need direction to the arts to counteract loss and preserve cognitive function. Social prescribing (SP), whereby surgery case managers, health support workers and link workers encourage people to choose their own arts programmes, can achieve this. But the focus of social prescribing is rarely on dementia.

 

 

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