Tuesday, 20 June 2017

Putting care at the heart of our communities


“Our residents do not live in our work place, we work in their home.”
I have been sharing this quote from a care home worker and thinking about it a lot over the last few weeks.
I feel very honoured as part of our ‘You Can Make a Difference’ Campaign and tour across the country to spend most days speaking to staff in hospitals, hospices and care homes, or our next generation of healthcare professionals in colleges or universities.
So often I travel home feeling inspired by the people that I’ve met and pledges that we’ve received.
The quote made me reflect on the way that residential care is often thought about, both in terms of the people who live there and the staff who work there.
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Communities are in our hearts, we are the heart of our communities and our homes are at the heart of our community and relationships. This isn’t something that should change when we start live in a care home, after all, as the quote points out – this is our home now.
If we want to create friendly and supportive communities we have to include care homes, the people who live and the people who work there.
If we are going to ask people ‘what and who matters to you?’, let’s make sure we ask the people living and working in care homes too.
What can you and I do to help change perceptions, and make sure that people living in residential care remain at the heart of our communities?
For my part, a big focus of my work through the Dementia Carer Voices project has been about highlighting the unique life stories of people living with dementia and their carers, and celebrating the role of the staff that make a real difference to their lives.
“Our residents don’t live in our work place, we work in their home”. In fact, our residents don’t just live in our care homes, they live in our communities and we can all play a part in supporting them to live well and stay included.
Tommy Whitelaw
Dementia Carer Voices Project Engagement Lead
The ALLIANCE
Tommy 

Campaign Update

Dementia Carer Voices has engaged with over 60,000 people in person over the last 2 years at over 500  talks and event. Collecting 12,000 pledges from health and social care professionals and we’d like to share some of their inspiring words, and help celebrate the work they do to putting pledges in to practice make a difference.

We are very inspired by the different ways individuals, hospitals, universities, care homes and care at home teams have been putting pledges in to practice. 

Read our case studies of how hospitals, universities and care homes are putting people at the heart of their work at:




 You can read every pledge here athttps://dementiacarervoices.wordpress.com/pledges/


Friday, 2 June 2017

5 day tour with NHS Western Isles for dementia awareness week 2017

I  would like to take this opportunity to thank the Elizabeth Shelby, NHS Western Isles Dementia Consultant Nurse,  Denise Symington, NHS Western Isles Patient Focus Public Involvement Development Officer, and all at   NHS Western Isles @NHSWI  for the kind invite and for putting this tour together over dementia awareness week 2017 

with  great thanks to Chief Nursing officer for Scotland Fiona McQueen  @FionaCMcQueen  as This is part of our new partnership working With the CNOd 

Tommy 

Tommy’s Hebridean Tour – Dementia Carer Voices: You Can Make a Difference.
In conjunction with NHS Western Isles, Tommy Whitelaw from Health and Social Care Alliance Scotland (the ALLIANCE) Dementia Carers Voices will be hosting a series of events aimed at raising dementia awareness for people with dementia and their carers.
Tommy, who lives in Glasgow, was a full-time carer for his late mother Joan who had been diagnosed with vascular dementia. Through supporting his mother, he became a well-known national campaigner raising awareness of the issues surrounding dementia.
The events, which are being held throughout the Western Isles, will also be attended by Elizabeth Shelby, NHS Western Isles Dementia Consultant Nurse, and Denise Symington, NHS Western Isles Patient Focus Public Involvement Development Officer, and will enable those with dementia and their carers to meet in a relaxed and friendly environment, encouraging them to discuss issues which affect them.
Tommy said, “My motivation as a carer came from the love I had for my mum and I would do it all again in a heartbeat, but my experience has shown me just how tough it is to live with dementia and how many struggles it can bring. I felt passionately that no one should have to face the confusion, loneliness and isolation and my passion to raise awareness of dementia and its impact on families has grown even stronger since my mum’s passing. I am working on The Dementia Carers Voices project with the ALLIANCE which will build on my ‘Tommy on Tour’ campaign by engaging with carers, collecting their life stories and raise awareness amongst health and social care professionals on both dementia and caring.”
The ‘No one ever asked’ short film, which was produced by Tommy to raise awareness for people with dementia and their carers from a carer’s perspective is available to view at: https://www.youtube.com/watch?v=c6sm4jOxeQs
During the events Tommy will provide an emotional account of caring for his mother, whilst promoting the work of Dementia Carer Voices, which raises awareness of the issues around caring for someone with dementia including among health and social care professionals, students and the wider public.
Elizabeth Shelby, NHS Western Isles Dementia Consultant Nurse, said “Tommy’s experience will ring true with many people who had difficulty finding and accessing support following a dementia diagnosis.
“In the islands, particularly in the more remote areas, it has been families and communities who have provided the main support to their loved ones and we need to ensure those carers have all the information and help that they need to carry on. The local strategy aims to ensure that wherever you live, you do not need to face dementia alone. Dementia is everyone’s business and knowing what anyone can do to make a difference is a first step.”
As part of the project’s pledge campaign and in the lead up to ‘What Matters To You’ day being held on June 6th, additional events are also being planned for health and social care professionals and students to receive information to support them in delivering compassionate, personal and relationship based care. Those attending will be encouraged to create pledges, with the simple message of how individuals can make a difference, no matter what their role.
The ALLIANCE`s Dementia Carer Voices particularly highlights the role of carers as experts, and champions how they should be recognised for the value that they bring to the life of their loved ones and to society as a whole; carers as people with needs and carers as people with independent lives. Furthermore it empowers carers by providing information based on the Charter of Rights and Carers Strategy about caring for someone with dementia, and captures the experiences of carers across Scotland with a view to informing future policy and service provision.
Events will be held as follows:
BARRA:
Wednesday 31st May – Meet and Greet Carers and people with Dementia. 1.30pm-2.30pm at Cobhair Bharraigh, Castlebay.
UISTS:
Thursday 1st June – Carers Morning Tea. 10.30am-11.30am at Sacred Heart House, Daliburgh.
HARRIS:
Thursday 1st June – Staff and Carers Tea. 7.00pm-8.00pm Harris House, Tarbert.
LEWIS:
Friday 2nd June (two events)
* Opportunity to Visit the Clisham Memory Garden from 1pm-1.30pm in Clisham Ward Garden at Western Isles Hospital, Stornoway. Volunteers involved in readying the garden for spring are invited to join. Entry via the garden gate.
* Ceilidh on the Ward from 1.30pm-2.30pm in Erisort Ward, Western Isles Hospital, Stornoway.
Saturday 3rd June
A Memory March, hosted by Alzheimer Scotland, will be held to take place from 2pm at the Bridge Centre, Stornoway.

Read at: http://www.wihb.scot.nhs.uk/news/item/570-tommy’s-hebridean-tour-dementia-carer-voices-you-can-make-a-difference

Press Release

Dementia Carer Voices awareness campaigner embarks on a five day tour with NHS Western Isles for Dementia Awareness Week 2017

The Health and Social Care Alliance Scotland’s (the ALLIANCE) Dementia Carer Voices Project Engagement Lead, Tommy Whitelaw, will be holding a series of talks in conjunction with NHS Western Isles from 31st May to 3rd June. The talks are aimed at raising awareness for people with dementia and their carers.
The programme highlights the role of carers as experts and how they should be recognised for the value that they bring to the life of their loved ones and society.  It empowers carers by providing information based on the Charter of Rights and Carers Strategy about caring for someone with dementia, and captures experiences of carers across Scotland to help inform future policy and service provision.

ALLIANCE Director, Irene Oldfather said,

“We are delighted to be invited back to give talks in the Western Isles. This project reaches out and touches the hearts of so many people, not least the health and social care professionals who attend the talks and make their pledges. These interactions are an ideal opportunity for staff to pause and reflect on what is really important to the people in their care. Make a pledge, make a difference.”

Tommy said,

“My motivation as a carer came from the love I had for my mum and I would do it all again in a heartbeat, but my experience has shown me just how tough it is to live with dementia and how many struggles it can bring. I felt passionately that no one should have to face the confusion, loneliness and isolation and my passion to raise awareness of dementia and its impact on families has grown even stronger since my mum’s passing.”

Further information
Talks and events:
Barra: Wednesday 31st May - Meet and Greet Carers and people with Dementia.  1.30pm-2.30pm at Cobhair Bharraigh, Castlebay.
Uist: Thursday 1st June - Carers Morning Tea.  10.30am-11.30am at Sacred Heart House, Daliburgh.
Harris: Thursday 1st June - Staff and Carers Tea.  7.00pm-8.00pm Harris House, Tarbert.
Lewis: Friday 2nd Junetalk followed by Ceilidh 1.00 pm-2.30pm in Erisort Ward, Western Isles Hospital, Stornoway.
Lewis: Saturday 3rd June - A Memory March, hosted by Alzheimer Scotland, will be held to take place from 2pm at the Bridge Centre, Stornoway.



Notes to editors
·           The Health and Social Care Alliance Scotland (the ALLIANCE) is the national third sector intermediary for a range of health and social care organisations. The ALLIANCE has over 1,800 members including a large network of national and local third sector organisations, associates in the statutory and private sectors and individuals. Many NHS Boards and Health and Social Care Partnerships are associate members.
·           The ALLIANCE’s vision is for a Scotland where people who are disabled or living with long term conditions and unpaid carers have a strong voice and enjoy their right to live well.
·         Dementia Carer Voices blog: https://dementiacarervoices.wordpress.com/
·         The ‘No one ever asked’ short film, which was produced by Tommy to raise awareness for people with dementia and their carers from a carer’s perspective is available to view at: https://www.youtube.com/watch?v=c6sm4jOxeQs
·         As part of the Dementia Carer Voices ‘You Can Make a Difference’ campaign and in the lead up to ‘What Matters To You’ day being held on June 6th, additional events are being planned for health and social care professionals and students to receive information to support them in delivering compassionate, personal and relationship based care.
·         Tommy Whitelaw toured Scottish towns and cities back 2011, when caring for his late mum Joan, in a walk to collect life stories from fellow carers and people living with dementia and is delighted to have been invited to give another series of talks with NHS Western Isles.
·         Our flagship ‘You Can Make a Difference’ campaign has now received 13,000 personal pledges from health and social care staff and students at hospitals, universities, care homes and colleges from across the country.  

Contact

Tommy Whitelaw, tommy.whitelaw@alliance-scotland.org.uk 0141 404 0231; 07921395712




Thursday, 1 June 2017

Dementia Carer voices May-June Newsletter is now Available to read

Dementia Awareness Week 2017 is coming up #DAW2017

Dementia Awareness Week 2017 is next week, from 28th May to 4th June. To mark the occasion and to raise awareness of dementia, DCV will be holding a series of events and activities.
We will aim to publish one post each day on our blog to mark Dementia Awareness Week and keep you up to date on our work. Please follow these posts on our blog. #DAW2017

DCV tours the Western Isles for Dementia Awareness Week 2017

Dementia Carer Voices’ Project Engagement Lead, Tommy Whitelaw, will be holding a series of talks in conjunction with NHS Western Isles from 1st June to 3rd June. The talks will coincide with Dementia Awareness Week 2017 and are aimed at raising awareness for people with dementia and their carers.


We will be running daily posts about Tommy’s tour. You can keep updated on the tour and see all the details of Tommy’s talks and events on our blog.

 

Project Engagement Lead, Tommy Whitelaw, meets the First Minister

Dementia Carer Voices Project Engagement Lead, Tommy Whitelaw, met with the First Minister, Nicola Sturgeon, in the Scottish Parliament on the 26th April. It was a great honour and an opportunity to discuss the DCV project and share the story of the people we’ve met and pledges we’ve received.

DCV attend Focus on Dementia Conference

On the 10th May, ALLIANCE Director, Irene Oldfather, Project Engagement Lead, Tommy Whitelaw and Policy and Information Intern William Griffiths attended Focus on Dementia’s conference at the Crowne Plaza Hotel in Glasgow.
Tommy and William manned our stand and engaged with lots of people about the work of Dementia Carer Voices and the ALLIANCE. We were visited there by, among many others, Tom McCarthy from Health Improvement Scotland and the team from Hatton Lea Care Home that Tommy visited last month.
We brought the DCV pledge tree on which people wrote reflections about what caring a person with dementia means to them. Please see the blog for some of the inspiring pledges we received on the day.
Irene spoke at the ‘on the couch’ session about the importance of person centred care, and shared some reflections on what barriers carers face in providing high quality care.
It was a good day, and great to meet many unpaid carers, people with dementia and policy professionals on the day.
Take some time to read the inspiring pledges here.

ALLIANCE Director, Irene Oldfather, to speak at BSG Scotland Conference


British Society of Gerontology Scotland Networking Seminar are organising a conference at Glasgow Caledonian University 12.00 – 16.30 Wednesday 14th June, 2017.
The conference will discuss: Are we ready to integrate health and social care?
Alliance Director, Irene Oldfather, who has been asked to present at the conference, will address her talk at ensuring person centred approaches in the integrated health and social care environment

Glasgow Housing Association and #WMTY17

This month one of our guest blogs came from Gregory Hill-O`Connor, Our Voice Co-ordinator at the Alliance. Greg tells us about his visit to Glasgow Housing Association and What Matters to You Day.

“It Isn’t Joy in Work; Joy IS the Work” – Guest Blog

Our other guest blog this month came from Hans Hartung from NHSAA. He talks about the power and importance of connectedness in experiencing joy in your work. Linking nicely with #WMTY17

@CombinedNHS Launch What Matters To You Pledge Trees

A big thank you to Maria Nelligan @Nell1Maria – Director of Nursing and Quality, Julie Anne Murray @JulieAnneM2016, Colin Burgess @StaffsOatcakes and all at @CombinedNHS  Trust for inviting Tommy to speak at their Annual Conference and help launch initially 25 what matters to you pledge trees across all areas of the trust and community.
Maria and Julie Anne helped support 4 talks at Keele University with Tommy and Colin and invited Tommy to speak at the trust conference.
The day was truly inspiring. We are looking forward to watching the trees grow and to returning later this year to meet the teams again, to capture the story of pledges, what matters to staff and what matters to people across the trust areas.
After the morning sessions, the conference broke out to a safari quick fire 15 minutes sessions, sharing ideas then moving on to the next table.

North West Non-Medical Prescribers Pledge to Make a Difference

Thanks to David Reddy, Admin and Clerical Support Officer the Association of Non-Medical Prescribers for kindly inviting Tommy to speak at their Annual Conference at the AJ Bell Stadium in Salford on April 25th 2017.

Also, a big thanks to Dr Debbie Robertson, of Chester University, to suggest Tommy as one of the speakers.
 

Over 200 delegates from across the North West attended and made personal pledges that you can read below.

Future DCV events

Keep up-to-date with events DCV are attending over the next month. To find out more, see our “Get Involved” page over on our blog.

ALLIANCE Conference - Change: The Health and Social Care Integration event


Join the ALLIANCE, our members and partners at our 2017 annual conference on the 30th May. It will be focused on integration and change. What kind of change is needed? Where are the examples of change happening for the good? Is it happening fast enough in health and social care? What are the factors that drive the kind of change that makes a positive difference to people’s lives? How can we influence change?
The event will focus on putting people firmly at the centre of decision making and will cover broad areas that affect people’s lives. The programme and venue will be designed around different zones reflecting many of the key issues that most affect the lives of people who live with long term conditions, disabled people and unpaid carers.
Have a look at our conference agenda. Download your booking form here or call 0141 404 0231 to get support to fill in your form.

Meet the team at upcoming conferences and events

June will be a busy month for the DCV team. We are attending several events and conferences. In addition to Tommy’s tour of the Western Isles and Irene’s speech at Caledonian University, we will be attending:
We will also be showing a poster displaying our work at the Alzheimer’s Scotland and NHS Scotland Conferences.

Connect with Dementia Carer Voices

There are many ways to connect with Dementia Carer Voices. Last month we launched our Facebook page, we can be reached on Twitter or through email at dementiacarervoices@alliance-scotland.org.uk. Do get in touch with any questions about our upcoming talks or events, if you want to share a blog with us or just to say hi. 

What matters to you day - 6 June 2017

What Matter To You day is on the 6th June this year. Find out more information over on the #wmty17 website and see how you can get involved, how to order free resources and what activities will be taking place.
The ‘What matters to you?’ team have been redeveloping the resources, and are pleased to let you know that these are now available.
Connect through:
·         Facebook page – https://www.facebook.com/whatmatters2you/ 
·         Twitter - @WMTYScot > and #wmty17
·         Email - hcis.personcentredscot@nhs.net
Dementia Carer Voices also has What Matters to You Case Studies live on our blog. 

Creative Competition 2017

DCV’s colleagues at The Health and Social Care Academy are running their third annual Creative Competition. This year’s theme is on change and they are partnering with Scottish Recovery NetworkWrite to RecoveryReachout with Arts in Mind and Mind Waves.
They are seeking entrants on the following:
  • What you need think needs to change in Scotland to keep us living well?
  • What you do to stay healthy and well?
  • What one thing you would change where you live to keep you well?
There are five categories; poetry, short story, film, photography and arts and crafts and the competition will run till Wednesday 19th July.
This year’s partnership with Write to Recovery means that entrants to the poetry and short story category can upload their submission direct to the Write to Recovery site.

Living with Dementia - Caring for a loved one - Further support andInformation

There is an increasing range of help available to support day to day life for those affected by dementia, including assistance with speech and language, nutrition, adaptations and equipment and specialist occupational therapy services. Information about the full range of services available to support people with dementia and their carers in your area can be obtained by contacting your local Social Work Department and /or GP practice.
Under the Scottish Government’s Post Diagnostic Support Guarantee, anyone diagnosed with dementia on or after 1 April 2013 is entitled to receive a minimum of a year’s worth of dedicated post-diagnostic support, coordinated by a named link worker. This support is designed to help the individual and their family adjust to the diagnosis, navigate through the services available and plan for future care. You can find out more by contacting your GP or local Community Mental Health Team.

Alzheimer Scotland:

ASAD Logo
Alzheimer Scotland’s specialist dementia services provide personalised support designed around each individual, including 1:1 support and day services. Their local Dementia Advisors and 24 hour Dementia Helpline are always there for advice and information. Their branches and community activities, from dementia caf├ęs to football memories, are a great way to meet other people and benefit from mutual support.
24 hour Dementia Helpline: Freephone 0808 808 3000

‘Getting to Know Me’ resource:

Getting to know me
If the person you care for is admitted to an acute hospital setting, you can ask a member of staff for a ‘Getting to Know Me’ form. This allows you to record personal information about their likes and dislikes, names of family and friends, and what may be worrying them while they are in hospital.
The information, which will be kept at the bedside, helps staff to build a fuller understanding of your loved one’s life story, preferred routines and specific pieces of information which may be helpful during a hospital stay or attending outpatient services such as what helps them to rest or relax.

Charter of Rights for People with Dementia and their Carers:

Charter
The Charter of Rights for People with Dementia and their Carers in Scotland sets out the rights of people with dementia and those who support them, aiming to empower them and the community as a whole to ensure these are recognised and respected.

The Standards of Care for Dementia in Scotland:

Standards
The Standards of Care for Dementia in Scotland are designed to inform and empower people with dementia and their families and carers on the level and quality of care they should expect from all dementia services and in all care settings. The standards also tell people what they can do if they think the standard of care to which they are entitled is not being met.

Glasgow City Dementia Strategy:

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The emerging Health and Social Care Partnership in Glasgow is working alongside Alzheimer Scotland to develop a Glasgow City Dementia Strategy which will be published early 2016. This strategy will provide a framework to support high quality dementia services and help create a Dementia Friendly Glasgow.
Please click here to read Glasgow Dementia Strategy WEB.

Care Inspectorate:


Care inspectorate logo
Regulates the quality of social work and registered care services. It can investigate complaints against registered care providers.
Compass House, 11 Riverside Drive, Dundee, DD1 4NY.

Self Directed Support:

sds
The Self-directed Support Act aims to provide local authorities with a power to support carers in their caring role. To find out more information, please visit  www.selfdirectedsupportscotland.org.uk 

Scottish Public Services Ombudsman:

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Considers complaints about organisations providing public services in Scotland, normally only once you have been through the complaint procedure of the organisation involved.4 Melville Street, Edinburgh, EH3 7NS.

Equal Partners in Care:

Equal_Partners_in_Care-final
Equal Partners in Care (EPiC) is a joint project between NHS Education for Scotland (NES) and the Scottish Social Services Council (SSSC).
They aim to support workers from health, social services and other sectors to work in partnership with carers and young carers, and to achieve better outcomes for all involved in the caring relationship.

MindMate App:

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MindMate is the ultimate platform for people with dementia, their families and caregivers. The award-winning MindMate App engages people with Alzheimer’s and helps them stay independent. Together with MindMate+ this gives caregivers and family members peace of mind by providing remote access and useful tools to offer a helping hand regardless of their location.
With great support of the ALLIANCE, the Dementia Carer Voices team and especially Thomas Whitelaw as community advisor, the MindMate Team follows the mission to not only raise awareness but to make a real difference for people affected by dementia.
Find out more: www.mindmate-app.com
Download the free IPhone and IPad App here: itunes.apple.com/gb/app/mindmate-empowering-people/id1030422375

Video blogs and interviews featuring Tommy are available below:



Healthcare Improvement Scotland:

healthcare improvement scotland logo
Healthcare Improvement Scotlandis the national healthcare improvement organisation for Scotland and part of NHS Scotland. They work with people who use supports and services, carers, communities, staff who provide care in hospitals, GP practices, clinics, NHS boards and the public.
They promote 5 key “Must Do with Me” areas which aims to ensure that people are at the heart of their health care and support plans.


Health Innovation Network:

The Health Innovation Network have put together a Dementia Peer Resource Pack  which brings together evidence based resources to help community groups and funders set up and run peer support groups, as well as guidance on how to make older people groups more dementia friendly. It includes films, case studies, policy and research related to the benefits of peer support, as well as resources on funding, staff training and evaluation of groups. It was developed in England and whilst the policy landscape is different, it is a valuable learning resource.

NHS Health Scotland – dementia publications web links:

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Coping with dementia: A practical guide for carers 
Date: 10 April 2014
Description: This book contains information and advice for people who care for someone in the middle to late stages of dementia (moderate to severe dementia). It aims to: – help you feel less alone – give you practical advice on coping – help you to find caring more rewarding and less stressful – show you where to go for help and for more information.
Coping with dementia DVD
Understanding dementia: A guide for young people 
Date: 22 August 2012
Description: This booklet is for you if you’re a young person, and someone you’re close to has dementia. Maybe it’s your mother or father, one of your grandparents, another relative or a family friend. This booklet will help you to understand what dementia is, and what’s happening to the person with dementia, cope with the effect the person’s illness has on you, and find help and support if you need it.
Worried About Your Memory?
This resource is designed to help you understand more about memory loss, so if you are worried – either about your own or someone else’s memory – you can seek advice and, if necessary, get treatment.
Living Well With Dementia (previously Facing dementia)
Date: 14 April 2014
Description: A booklet for those who are either worried about dementia or who have been diagnosed. It provides reassurance and suggests practical steps to improve or maintain dignity and the quality of life as far as possible.
Living Well with dementia DVD
Younger people with dementia: living well with your diagnosis
Produced by NHS Health Scotland in partnership with Alzheimer Scotland and the Scottish Dementia Working Group, ‘Younger people with dementia: living well with your diagnosis’ DVD is designed for the person who has just been diagnosed with younger onset dementia (dementia under the age of 65) and for the family and friends of the person diagnosed.
The DVD provides insights and information from younger people with dementia and their family carers about their journey to diagnosis and which resources are available to support living well with dementia. The DVD aims to provide information on:
  • helping people in the early stages of diagnosis to understand more about their illness
  • sharing experiences around how to ‘live well’ after a diagnosis of dementia, as well as offering practical advice on coping with its effects
  • suggesting where people with younger onset dementia, their families and carers can go for further support.
  • Younger people with dementia: living well with your diagnosis DVD
  • http://www.healthscotland.com/uploads/documents/22313-Younger%20people%20with%20dementia.pdf


Dementia and Sight Loss:

RNIB logo
The Royal National Institute for the Blind together with Alzheimer’s Scotland have produced an information booklet on Sight Loss and Dementia, available here.
They have also produced Top Tip Cards on how to support Older Person with Sensory Loss, available here and here.
For further support, please call the RNIB Helpline on 0303 123 9999
A full list of their resources can be accessed at

A full directory of our videos can be found on our Youtube channel here.

Dementia Carer Voices July Newsletter in Now available to Read or Download

Dementia Carer Voices June-July 2017 Newsletter                    Dementia Carer Voices Goes to Parliament It’s been a...