Dementia Ambassadors across Scotland add Pledges


The team would like to thank Bupa Admiral Nurses, Gareth Hammond and Tom Bohlke for inviting Tommy to speak at the Bupa Dementia Ambassadors Conference in Glasgow on 30th Nov 2016.

Care home ambassadors from all across Scotland where in Glasgow for the day at the event to share work and learn together.


Thank you to all for the great kindness and inspirational pledges below.

We are looking forward to visiting many of the people we met today early next year to launch more #makeadifference Pledge trees across the country.

Team DCV

I pledge to listen more and do more and be kinder to everyone involved

Vicky Bradley

I pledge to be the best and listen to everyone

Claire MacNelly

I pledge to care and support every person I care for as an individual, learning and supporting their individual needs. I promise to give the best care I can and always listen and know their life story and what makes that person happy.

Pamela Ross

I pledge to learn about everyone I care for story no matter the communication barrier.

Kerry O’Rourke

I pledge to continue holding hands and giving cuddles reassuming and listening to the stories. This is what I do best, and what I will always do.

Isobel McFarlane

I pledge to learn more about the residents past and continue as much as possible to make my carer for them as close as possible to that.

Linda Trainer

I pledge to do more to encourage staff to see how important they are and to do more personally to find out what is important to people in my care and their families

I pledge to learn about each individual’s story that I care for and implement their interests to their day to day life and care and activities

Graham Taggart.

I pledge to communicate to other new carers, the importance of listening, lending and earing, giving that important time to people who need it

Elaine Mulholland

I pledge to keep training and to keep up to date, doing my best to help others.

Sandra Stewart

I pledge to help and listen to people and keep the love stories going.

Craig Petriel

I pledge to always be a friend, to help to combat loneliness

Veronica Allen

I pledge to continue to provide a high quality of care to each and every one of my residents, by listening to who and what matters to them

Lauren Deans

I pledge to find out what matters and who matters. Listen to the love story; know the person not the disease


I pledge to keep going with myself and all the staff to keep up the good job we do at our care home

Helenka Grady

I pledge to always carry out my job and keep pushing to make a difference to the lives of those who I care for and families.


I pledge to one day hopefully be as passionate about recognising dementia and the person as Tommy himself is, and pass on this knowledge to others to educate them about dementia too.


I pledge to keep on the commitment and compassion to the extent people may encourage about your dedication

I pledge to continue to enable anyone living with dementia to live their lives how they wish.

Karen Anderson

I pledge to always take time to know the person I am caring for and to never forget the person they truly are. You are inspirational

Sharon Glassford.

I pledge to care for people living with dementia as I would like my parents to be cared for

Patricia Brennan

I pledge to give 100% love care and time

Lorraine Hawkins

I pledge to listen more and to think about the person, to pledge to do my best


I pledge to ensure that I know what matters and who matters to all the people I care for to have a big heart and love and be there for all my residents and family

Liz Greenan

I pledge to always be the person to learn on and be a friend to those who need one.

Lauren Robertson

I pledge to continue to be the best person, friend nurse that I can be

Caroline York

I pledge to always put the person before the condition

Helen Stoddar

I pledge to ask what matters and to listen to everyone I ask that


I pledge to keep providing the support and acknowledge that each of us can make a difference to someone

I pledge to listen to what’s being said either in voice or expressions.

Debbie Shields

I pledge to listen, to respect and to learn people deeper story to support and make a difference. No matter how small

Ashleigh Smith

I pledge to continue to develop my knowledge and understanding of people living with dementia and their families/carers and to continue to take it for ward within my workplace

Donna Jack

I pledge to take time to listen to people living with dementia, hear their stories and take that as a point of caring and support I can offer to them


I pledge to do my best to improve the care and the person living with dementia.

Marie Mcloon

I pledge to always do my best to see the person and not the dementia and to support everyone that asks for help. Resident, family, staff…

Hugh Allison

I pledge to see the person and not define them by their condition


I pledge to always give time to listen to you

Catherine Gibb

I pledge to always show kindness because I know people always respond to kindness

Emma Lindsay

I pledge to understand life stories and likes, dislikes of those with dementia in my workplace and those in community to support their families

Fiona Fing

I pledge to always remember my mum is my mum and the people I support are the same to someone

Billy Thomson

I pledge to always listen and offer support in any way I can.


I pledge to do what I do better

Peter White

I pledge to work because I want to not because I have to, and make a difference if I can one day at a time.


I pledge to work harder to get to know our people living in our homes to change the language we use.

Aileen Waton

I pledge to continue doing the best I can for people living with dementia and support my mum to live a happy life to the end.

Lyn McConville

I pledge to always take the time to get to know our residences what’s important to them and promote recognition for the staff that always makes the difference

Alan Twigg

I pledge to treat everyone as individuals listen to their story and act upon in a person centred way.

Lisa Fleming


Posted in "You Can Make a Difference" Pledges

Association of Chartered Physiotherapists Pledge to Make a Difference


Big thanks to the Association of Chartered Physiotherapists, In Oncology and Palliative Care for inviting Tommy to speak at their Annual Conference on Friday 25th November 2016.

The day was truly inspiring and we would like to thank Kathy Pantelides, Kim Barlow, the conference organisers and all the delegates for the great kindness and pledges below.

I pledge to find out what matters and who matter to my patients.

Natalie Nye

I pledge to never forget why I chose this job I did.

Emily Stowe

I pledge to give more time with my mum.

I pledge to always remember the patient’s story and the person behind the patient.

Sally Davis

I pledge to ask what matters and who matters to my patients.

Vanessa Churchouse.

I pledge to ask patients and carers what matters to them to try to make a difference.


I pledge to say thank you, to those around me every day!

Lucy Carter

I pledge to treat my patients as I would if they were my mum

Anne English

I pledge to always endeavour to engage with the dementia sufferers by trying to understand their needs.

Linda Willis

I pledge to ask for my patient’s love stories how I might support and ensure these.

Abi Byrihmore

I pledge to continue to see each and every one or my patients and their carers as they person that they are

Jenna Venables.

I pledge to always ask everyone I meet through work or life generally, what matters and who matters to them, also to tell everyone at every opportunity about Tommy Whitelaw, his work, and amazing inspiration.

Lesley Sayliss

I pledge to always ask what matters and who matters and be the most caring person I can to all my patients.

Emma Imam

I pledge to ask about the love story/life story of my patient.

Dianne Leyland.

I pledge to see the person and not the condition

Rebecca Sellors

I pledge to on those occasions that I thing I cannot make a difference I will remind myself I can, I have to make a difference

I pledge to ask and listen to what matters to my patients and their family/carers, and who matter to them

I pledge to challenge undignified language used when discussing people with dementia

I pledge to remember that a diagnosis does not define a patient, and the patient is still a person. A unique and special individual that has done a lifetime of living.


I pledge to take time to find out who and what matters to all my patients.

Brid Hindley

I will continue to try at every opportunity to find out what has been and what remains important to each patient and to those that are close to them.

Delia Goddard


Posted in "You Can Make a Difference" Pledges

Launch of Pollok Pledge

In partnership with Glasgow Clyde College and Humza Yousaf MSP, Minister for Transport and Islands, Dementia Carer Voices launched a community pledge in Pollok, giving constituents the chance to reach out to their neighbours and help reduce isolation and loneliness.


Director Irene Oldfather chaired the day, read about her reflections here:

Chairing the launch of the Pollok Pledge on Monday was inspiring. Inspiring for many reasons but for me the enthusiasm of young people from ordinary families to want to do something, to make their local community and the lives of vulnerable people in it, better, was awe inspiring. Monday was the start of the ALLIANCE and Dementia Carer Voices support for making Pollok a Friendly community – for our most vulnerable citizens.


Social care students have pledged to make a difference such as Connie Creaney, who is a Level 6 Social Care student who has pledged to “make someone smile going through a difficult situation”.


Their commitment is already infectious and will have a cascading effect across shops, schools, local businesses, cafes. The people of Pollok are already rising to the challenge Local MSP Humza Yousaf joined the launch and pledged to do his bit to work with the community to take their aspirations  forward.


We also heard about ALLIANCE work tying in to the local community through the National Link Worker Programme, where Gerry Mitchell is our local person on the ground connected to the GP practice to promote health and wellbeing of local people. As a link worker, Gerry is responsible for linking people to community initiatives, taking forward the person centred agenda where we focus on what matters and who mattes to you. Gerry is very approachable and can be contacted via the local practice on 0141 531 6860

Our ALISS team have offered to assist the local community map its assets so that people know where to go to meet people. Reducing isolation is a huge part of promoting health and well being.

And of course the motivation behind the Pollok launch was our own Dementia Carer Voices Project Enagagement Lead Tommy Whitelaw, award winning campaigner who lives in Pollok and through his outreach with Clyde College involved the students and lecturers in taking forward the local initiative. Tommy’s carer journey looking after his mum Joan touched the hearts of students who wanted to get involved to reduce the loneliness and isolation that people can still feel in the busiest of streets.


Monday was the beginning of a great community initiative that will build capacity and involve people. Loneliness and isolation is everyone’s business.  If you want to get involved or speak to any of the team contact  us at the ALLIANCE on 0141 404 0231.

Posted in Events

Alzheimer’s Outlook 2016 Prospective Focus Group December 2016

Project Engagement Lead, Tommy Whitelaw will be off on his travels again on the 6th of December to Paris.

Tommy has been invited to runs a group discussion on: “The perspective of individuals and families facing chronic diseases – practical issues (work, finances, cultural attitudes…)”

More information on the event and sessions can be found below.



Alzheimer’s Outlook 2016 Prospective focus group, December 9th, 2016
“Which care if Alzheimer’s disease could be diagnosed  before any clinical sign?”

Scientific programme and schedule

1. Introduction

The Fondation Médéric Alzheimer initiated in 2007 a strategic reflection on how the future context of dementia may unfold in the next decades, in collaboration with international experts. This challenging endeavor implies engaging with uncertainty within limits of scientific plausibility. This prospective reflection is called the Alzheimer’s Outlook.

The multi-disciplinary expert group composition varies according to the focus given (prospective core group or special focus group) and to the evolution of existing knowledge at the meeting time. The prospective core groups discuss about long-range plausible developments of the extended dementia field, whereas focus groups discuss about specific issues to gain further insight in a given area. Expertise gathered varies from one group to the next. The expert group discussion remains confidential and restricted to group members. Some key elements are published in scientific journals.

A first prospective core group met three times between 2007 and 2010, under the coordination of Pr Henry Brodaty from the University of New South Wales (Australia). Time horizon was set to 2020. A synthesis of this work has been published1.

A second prospective core group met twice in 2012, led by Pr Philippe Robert, coordinator of the Research Memory Center at the Nice University hospital, France. Time horizon was set to 2025. A synthesis of this work has been published2.

In 2013 and 2014, three special focus groups, still led by Pr Philippe Robert, convened on the themes “Senses and Alzheimer’s disease” and “Technologies and Alzheimer’s disease”. An article focused on sensory mechanisms and dementia has been published3. An article titled “Technologies to address capabilities of people with dementia; from research to practice” has been submitted to Dementia.

In December 2015, a third prospective core group, still coordinated by Pr Philippe Robert, met to continue updating the Alzheimer Outlook, with a seminar titled: “Dementia beyond

2030: an update”. Seminar covered: disease scope; epidemiology, risk factors, and prevention; understanding of cognitive aging and dementia; biological causes of dementia; detection and diagnosis of dementia; new therapeutic targets for dementia; psychosocial research and interventions in dementia; assistive technology and dementia; sensory impairment and dementia; biomedical ethics and dementia; dementia care; public policies, economics, and dementia. A scientific article is planned.

In December 2016, The Fondation would like to bring together a specific focus group on prevention titled: “Which care if Alzheimer’s disease could be diagnosed before any clinical sign?” Time horizon, largely extended, is now set to 2050. A prospective, fictional scenario, to be challenged by the group, has been written by the Fondation Médéric Alzheimer to induce a high-level, open discussion within defined boundaries. This group will gather international experts from different fields (aging and public health, neurology, psychiatry, psychology, nursing, marketing management, engineering, neurobiology, economics, philosophy). The expert group will be coordinated by Pr Philippe Robert. A scientific article reporting the results of the seminar will be written by the Fondation.

2. Seminar objective

The expert group will discuss how the context of AD may evolve by 2050 under the angle of mid-life secondary or tertiary prevention after a diagnosis of AD has been established with a composite (biomarker, imaging-based) test with a 100% predictive value (hypothesis of diagnostic certainty).

Expert discussion will be based on a future fictional context described in the attached scenario: “Alzheimer’s disease repelled: lessons from four decades of prevention in people without clinical signs” (page 5 of present document).

This scenario deliberately intends to challenge the biomedical model of Alzheimer’s disease diagnosis and prevention within limits of scientific plausibility.

Group discussion should address the 3 following questions: 

Question 1: how to define the target population at-risk for AD, to be screened with the test? 

Question 2: what will be the consequences in everyday life for the people diagnosed for AD without clinical symptoms? 

Question 3: what medical and psychosocial interventions should be designed for this target population?

Geographic scope is Europe.

3. Seminar schedule

Meeting starts : 8h30

8:30 – 9:00
Paul-Ariel KENIGSBERG: Seminar objectives  Presentation of the members of the expert group

9:00- 9:10
Paul-Ariel KENIGSBERG: Scenario overview – “Alzheimer’s disease repelled: lessons from four decades of preventive care in people without clinical signs”

Individual reactions of experts to the key elements of the scenario:  Scientific plausibility, doubts, disagreements, pending questions…

10:10- 10 :25
Marion BERARD (Ecole normale supérieure):  “The value of knowing”

10:25- 10:35
Emilie HERMANT (DingDingDong Association): “The perspective of people living with an announced genetic disease and their families” (Huntington’s disease)

10:35- 10:45

Group discussion about the last 2 interventions

11:00- 11:45
Group discussion: context of diagnosis How to define the target population at-risk for AD, to be screened with the test?  (medical criteria, life situation, lifestyle…)? How to propose the test? How to announce the test results?

11:45- 13:00
Group discussion of situations 1-3 1. Simple diagnosis, effective symptomatic drug treatment  2. Simple diagnosis, moderately effective symptomatic drug treatment 3. Complex diagnosis, effective symptomatic drug treatment

13:00- 13:45
Lunch at the Fondation

Group discussion of situation 4: 4. Complex diagnosis, moderately effective symptomatic drug treatment

14:15 15:00
Tommy Whitelaw (The ALLIANCE): “The perspective of individuals and families facing chronic diseases – practical issues (work, finances, cultural attitudes…)” Group discussion: societal issues

Synthesis of the 4 situations Key elements for the scientific publication

15:30 16:00
Next steps Selection of journal for publication Closing remarks

Meeting ends : 16:00

Posted in Events

Association for Prescriber`s Delegates Pledge


23rd November saw our Tommy Whitelaw speak at the Association for Prescribers event in London.

Massive thanks to Sam Sherrington, Dr Barbara Stuttle CBE and all the Association for Prescribers for inviting Tommy to speak at the Annual Conference and AGM.

Sam has been a great supporter of our `Make a Difference’ Campaign and we were delighted when she put Tommy’s name forward to speak.


Thank you to all for the great kindness, opportunity and pledges from delegates below:

My pledge is to develop the idea of what matters to me for patients and staff

Nicky Parkes

I pledge to keep smiling and caring for my patients and colleagues, and both my parents with dementia

Tracey Ismail.

I pledge to take the time to find out what matter to the people I care about and for.

Sue Johnson

I pledge to use a new way of listening to help those around me that feel scared

Tracey Ellis

I pledge to ask: “What matters to you?” each assessment.

Geoff Hooper.

I pledge to suggest to my place of work to do a pledge tree, and to adopt the 5 must do’s

Moira Cain

I pledge to see the person in every individual I meet and learn what matters to them

Rachel Shaw

I pledge to say “afraid, frightened, and upset” not challenging


I pledge to support the implementations of 5 must do’s!

Jan S.

My pledge is to take the time to ask our patients, what matter to them

Kate Webb

My pledge is to all of our staff to be trained an recognised as dementia friends.

Nicholas Rumney

My pledge is to encourage more of my teams to become dementia champion with the trust to support families carers on my caseloads

Ann M.

I pledge to feedback on Tommy’s key manage at our admin away day and our next clinical summit.

Penny Keith

I pledge to never let a disease or condition influence my view of a patient. I will always see the name, the life and the history.

Callula Nulty.

I pledge to ask what people need, listen and act.

Katy H

I pledge to continue to make a difference every day.


I pledge to invite Tommy to came and tell Colchester hospital staff about his mum Joan.

Joanne Tonking


Few other pledges sent to us online:





Posted in "You Can Make a Difference" Pledges

Leading ‘Pocket Ideas – A moment in time’ has been a bit of a roller coaster!

Todays guest bog comes from Andrea Boyd, Occupational Therapist and Project Lead, based in Irvine.  You can follow Andrea on Twitter at @AndreaBoydahpmh.  Andrea tells us about “Pocket Ideas”, lets see what she has to say…



Looking back over the past 18 months sometimes it has felt like a slow climb to achieve a planned goal, and then sometimes everything moves so fast without a chance to put on the brakes and catch your breath!

Now that I have the opportunity to sit back and think, it really is a time to gather my thoughts and reflect on what I have learned on this incredible roller coaster. I say incredible because it has been! From the support gained from a wide range of staff to the experiences I have gained as project lead.

My project lead post started in the middle of September 2014, and that particular week I also excitedly and nervously began my MSc in Later Life studies at UWS. Add to that, our Activity Team won ‘Best Acute Care Initiative’ at the Scottish Dementia Awards. As a team we had a lot to celebrate, but even with a positive stamp of approval there was still a lot of work to be done.

In the early days of the project journey a ‘Project Charter’ was developed to consider the plans for the forthcoming months, and to keep in line with expectations outlined in our endowment bid. The roller coaster had started and I had jumped on with enthusiasm, passion and determination!

At this stage the project was still a prototype and there was ongoing evaluation using PDSA principles which assisted with design and development of the project. Five pilot sites were chosen across Ayrshire to incorporate 3 acute wards and assessment wards for older people with organic illness e.g. dementia. All wards embraced the project idea. Time was spent on the wards to introduce the prototype to staff, encourage them to use it, and to support the evaluation process. Having learned from our initial pilot in Pavilion 3, a more robust evaluation tool was developed with the support of Clinical Effectiveness and Scottish Health Innovations

Useful feedback was received from the pilot sites and included;

“Easy to implement simple ideas to engage clients.”

“Word games got a lot of patients talking about their life history.”

“Great way to stimulate memory.”

“‘Pocket Ideas’ provided lots of simple, easy to remember conversation starters that are helpful when speaking to patients with dementia.” and

“Great for the patients instead of them watching T.V all day.”



During the pilot the Activity Team worked closely with the Communications Department and particularly Emma Lehane-Allan our graphic designer who persevered with the many drafts of the project as it began to take shape. She really did a marvellous job!! Every draft was viewed by our Activity Team, and the many staff that supported the project as it evolved.

As a team we wanted to ensure the project could be spread and sustained, so it was agreed that Champions would be recruited. Our team set ourselves a mission to recruit Champions wherever we went, and to date we have Champions in North, East and South Ayrshire, and across Scotland too!! Staff have really embraced the project due to its simplicity and as a result meaningful conversations are happening with our older people! Many thanks to all our Champions!!




After so many project drafts (I think we all lost count), we reached the final pilot stage. A focussed period to look at the final product before heading to the professional printers. This was a very exciting stage, we had finally climbed that steep hill of achievement, and it was incredible to have the final draft in our hands! The feedback was extremely positive, and then it was all systems go to the printers. Our Activity Team were then fortunate enough to attend Ayrshire Achieves 2015, where we gained another award; ‘Light bulb moments-creativity and innovation’. Another fabulous achievement for the team!




While the books were being printed, it was full speed ahead to the launch, so no time to put the brakes on that roller coaster! The launch took place at the Park Hotel, Kilmarnock on 4th September 2015 and was attended by 200 delegates from Ayrshire and across Scotland. The day was filled with inspirational speakers, stall holders and experiential workshops. At the end of the day Centre Stage having led one of the workshops finished the day with singing, dancing and the finale of ‘ Auld Lang Syne’. It was an amazing day and each delegate took away their own copy of Pocket Ideas and additional copies for those who signed up as Champions. We still need Champions to support and sustain the project, so if you haven’t become a Champion already, please get in touch to find out more and come along to a Champions Network Forum.




Post launch the focus has been on the impact of Pocket Ideas. Evaluation questionnaires have revealed the following themes; person centred, communication, engagement in meaningful activities, increased confidence and getting to know patients, distraction from distressed behaviour, good size and useful resource, reduction of boredom, supports therapeutic relationships, sharing good practice, reduction of isolation and improvement in assessment.

Champions have been encouraged to consider real time questions to support the evaluation as well as sharing any case studies. Filming has been used to score interventions with and without the use of Pocket Ideas. The results have supported the theory that Pocket Ideas encourages person centred care through meaningful engagement.

Overall the impact in Ayrshire and across Scotland has been amazing. More people know about the project and would like to access it, and my request list continues to grow! The pdf will soon be available on our activity website and a route for organisations to purchase their own hard copies is being considered. Our next books ordered are for Ayrshire and Arran so watch this space!

So along the rollercoaster journey what have I learned? Most of all I have learned the importance of believing in yourself, as if you can do that, you can do anything! My role has been about leadership supported by my fabulous Activity Team, and so many other staff members.  It has taught me that leadership is about having a clear vision, a goal to achieve with the passion to do it, and that with this you need to nurture, support and encourage the team supporting you to achieve your goal.

So what next? I have returned to my clinical role with a continued and passionate interest in meaningful activity. I will continue to raise the awareness of Pocket Ideas and hopefully help to embed the project as part of our everyday practice!

A final thought, as most people who know me also know that I love inspirational quotes, so here it is;

“To dream anything that you want to dream. That’s the beauty of the human mind. To do anything that you want to do. That is the strength of the human will. To trust yourself to test your limits. That is the courage to succeed.” Bernard Edmonds

Many thanks to everyone who has supported Pocket Ideas.

Posted in 'Viewpoint' Blog Posts

Carers Rights Day, this Friday

As part of the project’s Carers’ Rights Day celebrations we would like to share and celebrate the 11,000 pledges made by people across the country who have pledged to make a difference to the lives of people with dementia and their carers.

Dementia Carer Voices have embarked on a campaign entitled You Can Make a Difference over the last two years, and have gathered pledges from Health and Social Care Professionals and students. ‘You Can Make a Difference’ offers carers of people with dementia a chance to have their stories told, and encourages participants to reflect on what they have learnt and pledge how they can make a difference to the lives of people with dementia and their carers. The project has also collected multi medium case studies, asking people with dementia, carers, and staff ‘what matters to them’, ultimately promoting a person centered approach to care.

As part of the project’s awareness raising activities, we also aim to empower people through the Charter of Rights for People with Dementia and their Carers which was launched on 8th October 2009. It had the backing of both Scottish Government and the Cross Party Group on Alzheimer’s and Dementia. The Cross Party Group argued a charter was necessary to tackle the stigma and discrimination people with dementia faced, and the exclusion of carers as decision makers in care. Using a simple approach, the Charter sets out the rights of people with dementia and those who support them to ensure that they, and the wider community understand their rights and that they are respected.

With the Carers (Scotland) Act agreed this year in Parliament, the theme of this year’s Carers Rights Day is extremely pertinent. Dementia Carer Voices champions a rights based approach to health and social care, and is pleased to share the commitment of people across the country to making a difference to people with dementia and carers.

This month a joint article has been published between the ALLIANCE and the Open University, based on the letters Project Engagement Lead Tommy Whitelaw collected from carers across Scotland. These letters have been analysed by Jane Joy and Diane Willis from Open University, with the results of their study now available:

Examining Dementia Caregivers’ Experiences,  The International Journal of Aging and Society, Volume 7, Issue 2, pp.59-72, November 10, 2016. By Jane Joy, Thomas James Whitelaw, Irene Oldfather and Diane Willis.

An ALLIANCE summary of the letters analysis is also available to download for free here: letter-analysis-summary

ALLIANCE Director Irene Oldfather said ‘Advancing the rights of people with dementia, and their carers who sometimes face extraordinary challenges and barriers in communicating their needs and wishes, is a just cause. By harnessing the power of carers’ lived experiences, the You Can Make a Difference campaign speaks to the hearts of people and communities across Scotland, with the simple message that dementia is everyone’s business and that you have the power to transform the experiences of people affected by the condition.”


07 Tommy Whitelaw-JG.JPG

Carers Rights Day 2016 is on Friday 25 November, this year’s theme is: Missing out? Know your rights as a carer. For more information please visit Carers UK

Posted in News