Dementia Action Alliance
The Carers’ Call to Action
Record of DAA CC2A Booklet Meeting 9th January 2014
Who Barbara Pointon, Peter Watson, Laura Cook, Steve Crabb, Jean Tottie, Joy Watkins, Simon
Kitchen, Rachel Niblock, Helen Wildbore, Abigail Gallop
Apologies: Hilda Hayo, Karen Harrison-Denning, Ruth Hannan (comments sent for meeting),
Rachel Thompson, Beth Britton Elaine Edgar (comments sent for meeting), Jo Lenham, Kate Hall,
Stephen Colegrave
Comments from Ruth Hannan:
‘There are a lot of info leaflets/booklets out there we don't want to reinvent the wheel and this
needs to stand out - it's representing a call to action so I feel needs to be more action than
information (hope that makes sense).
I would make it a manual, book of actions which included tips and pointers on what people can
do to support the call to action i.e. finding partners, allies etc, who to write to, what to say etc.
Rather than a section on your rights instead an action plan on improving your own
circumstances - same type of thing but more empowering/active. I think it definitely needs to be
pocket sized and possibly personalisable -like an old fashioned school exercise book. Needs to be
short and accessible. The focus needs to be on action, getting people to do things etc.’
Useful Information form Elaine Edgar:
‘I wondered when you are thinking of issuing the leaflet? Will it be available on line so that it
can easily be amended/updated? (and then perhaps downloaded for local use)?
It may be helpful to share with you the likely timings of completion of the
Care Bill, publication of associated regulations and guidance so that you can take into account
in your planning.
The Bill should be through its parliamentary stages in the next few months and should then
receive Royal Assent some time in the spring. Draft regulations and guidance will be issued in
April/May for 3 months' public consultation and the final versions will then be published at the
beginning of October 2014 -i.e. 6 months before implementation commences in April
2015.’
Brainstorming at Meeting
What (Content, format, look/feel)
Informing and empowering
Pertinent questions to ask authorities
Human Rights underpin all of the five aims of our shared vision
Split column/divided page of Q’s and solutions
What carers need to know?
What can you do?
Campaign tool
What do you need?
Who might help?
Can you tick these boxes y/n
Basic fundamental rights
Q’s you can ask your Health and Wellbeing Boards
Creating and supporting activists who will campaign.
Inc. 10 questions carers can ask of HWB/LA/CCGs
Accessible language – no jargons
Who? (Is it aimed at?)
Carers
Will also be useful for others inc. councillors to ask questions locally.
Why? (Is it needed?)
Carers want to be involved
Carers need information
Carers need emotional support
Will help carers cope better
The right questions to ask and to who
How? (Is it collated, designed, funded, distributed)
Funding – put in specific bids – 2 potentials highlighted (Unlimited and potential Personal
connection with a business)
Stephen Colegrave at Boston Books will be providing a free service to design and collate book
with CC2A
Booklet format agreed as:
* Hard copy A5 booklet – colour front and back cover, non colour inside.
* Also available as a downloadable A4 pdf version all non-colour.
Front Cover –

Based on current leaflet branding and DAA guidelines using Lucinda Sans font
size 12 and colours as per leaflet (suggested that cartoon should be altered to
reflect diverse ethnicity)

Punchy title needed to motivate people to pick up, give clear message that the
booklet will help and is not just another ask…. - e.g. ‘Are you Supporting
Someone with Dementia? – help with your needs and rights…..
Inside of front cover –

Very brief quote/endorsement about what this booklet is for and this is what you
will get from this….. for example Barbara states ‘If only I’d known about this
when I was caring for Malcolm….’
Suggested Content:
Page 1 & 2 (+ cartoon)
Aim One - Dementia is different……
Carers of people with dementia have recognition of their unique experience – ‘given the
character of the illness, people with dementia deserve and need special
consideration….that meet their and their caregivers needs’
Your Rights – Helen Wildbore will highlight a particular right to support this aim…..
Questions:

Do you have a person you can contact about your needs and the needs of the
person you look after?

Do professionals recognise the individual needs of the person you look after?

As a carer (looking after someone) do you recognise that you may have your own
needs?

Because of the change in the way the brain works in dementia do you know about
the importance of services and support who can help you to make difficult
decisions about the future?

Do you know about ‘mental capacity’
Answers/Solutions:
Anecdotes
………………………………………………….
Page 3: One page will provide a brief expert overview – expert to be identified
within DAA
Page 5 & 6 (+ cartoon)
Aim Two – Participation
Carers of people with dementia are recognised as essential partners in care – valuing
their knowledge and the support they provide to enable the person with dementia to
live well.
Your Rights - Helen Wildbore will highlight a particular right to support this aim…..
Questions:

Does your GP/Dr/Health & Social Care Worker listen to your concerns and views
about the person you are looking after?

Are you involved in discussions and decisions?

Do you feel you have sufficient information about the care you provide?

Do you know/understand about the type of dementia the person you are looking
after has?

Have you been helped to understand about dementia?

Are your views asked for?

Do you have the confidence to question/challenge professional’s decisions that
are made about you and the person you look after? This could be treatment,
medication, care planning etc

Do you feel able to enable the person with dementia you are looking after to live
well?
Answers/Solutions –

………………………………………………
Anecdotes –

………………………………………….
Page 7 One page will provide a brief expert overview – expert to be identified
Page 8 & 9 (+ cartoon)
Aim Three – Expertise
Carers of people with dementia have access to expertise in dementia care for
personalised information, advice, support and co-ordination of care for the person with
dementia
Your Rights - Helen Wildbore will highlight a particular right to support this aim…..
Questions:

Have you been told about where you can speak to somebody about dementia?

How supported do you feel?

Do you have access to an expert in dementia?
Solutions:

Ask your GP to refer to…….

Look for these job titles – the roles vary from area to area (Who is who job titles
and description)

Carers support groups

……………………………………………………………………..
Anecdote
Include something about the person and the person being looked after inextricable.
………………………………………………………………………………….
Page 10: One page will provide a brief expert overview – expert to be identified
Page 11 & 12 (+ cartoon)
Aim Four –
Carers of people with dementia have assessments and support to identify the on-going
and changing needs to maintain their own health and well-being
Your Rights – Helen Wildbore will highlight a particular right to support this aim…..
Questions
Does your GP know you are a carer?

How is your own health and well-being?

Have you had an assessment of your own health and well-being needs carried out
by a professional? As a result do you feel you have help?

Do you feel that the person who assessed you had the right expertise to
understand your situation?

What would happen to the person you look after if you were unable to provide
that help to them e.g. if you became unwell or went into hospital?

Do you have any emotional and psychological help to deal with the stress of
caring?

Do you feel you have any help with the bereavement/living grief/loss of
partner/loneliness you may feel?

Do you have information and/or help with understanding your financial and legal
situation?

Do you know about advocacy services?

Do you have support from your employer for flexible working/leave?
Solutions:

On-going and regular reviews and assessments

If a need has been identified but is not met it is unlawful
Anecdotes:
Young person – e.g. Joy Manyon
Page 13: One page will provide a brief expert overview – expert to be identified
Page 14 & 15 (+ cartoon)
Aim Five –
Carers of people with dementia have confidence that they are able to access good
quality care, support and respite services that are flexible, culturally appropriate, timely
and provided by skilled staff for both the carer and the person for whom they care.
Your Rights – Helen Wildbore will highlight a particular right to support this aim…..
Questions –

Do you know what support is available?

Has anyone spent time with you to talk to you about what services (Health,
Volunteers, and Social Care etc) are available at different stages as dementia
progresses?

Gatekeeper
Solutions –

Dementia Information Prescriptions

Memory clinics/services

Domiciliary (Home) care

Day services
Anecdotes –
Partnership
Skills that have been lost
Roles
Page 16: One page will provide a brief expert overview – expert to be identified
Page 17 & 18
References and useful contacts
Page 19 & 20
Glossary of professionals/job descriptions and what you may expect
Page 21 & 22
Blank pages for own notes, important numbers and contact details
With headings & titles:
Inside back cover
?
Back cover
Logos of organisations supporting CC2A
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