This document provides information about an event to discuss integrated care for dementia and the launch of a new book on the topic. The event will feature several speakers discussing different aspects of dementia care from various perspectives, including clinical psychology, technology, acute hospitals, care homes, and hospices. It will include a panel discussion on making person-centered integrated care a reality and the benefits of involving those with dementia and their caregivers in services and research. The event aims to stimulate discussion on providing the best possible health, wellbeing, and care for those living with dementia through a holistic and collaborative approach.
2. Tbe third and final book in my trilogy for 2017
My book on the organisation of care in dementia follows my
two successful books ‘Living well with dementia: the impor-
tance of the person and the environment’ and ‘Living better
with dementia: good practice and innovation for the future’.
My first book, based on the NICE QS 30 on supporting
living well in dementia, won best book of the year award for
BMJ Books in 2014. My second book was widely praised,
likewise, as a substantial contribution to the literature.
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3. The aim of this afternoon is to stimulate discussion of integrated care in dementia, and to cele-
brate the publication of a book on the subject from Dr Shibley Rahman by Jessica Kingsley Pub-
lishers (2017).
It is anticipated that there will be 1 million people in the UK living with dementia by 2025 (https://
www.alzheimers.org.uk/statistics). Currently over 1.3 million people provide over 50 hours of
care per week (https://www.carersuk.org/news-and-campaigns/press-releases/facts-and-figures).
About the event
It is shocking that some professionals, despite the intense public awareness campaigns of recent years,
hold the view that “nothing can be done about dementia”, and this indeed can affect an ability to disclose
a diagnosis. But such trenchant views, although held in a minority, exacerbate stigma, prejudice and
discrimination concerning dementia.
Health is a core component of wellbeing, and, irrespective of economic structures, everyone legally has
a fundamental right to health. Dementia as such “never travels alone” for a number of reasons. Dementia
does not only affect a person who has received a diagnosis of dementia, but also potentially his friends
and family. Also, it is not uncommon for a person living with dementia to be living simultaneously with
a number of co-morbidities. It is this complexity, which makes dementia so challenging.
Persons who’ve received a diagnosis of dementia are clearly entitled to the best health and wellbeing
possible, and that is regardless of precise environment (e.g. own home, hospital, hospice or care home).
After diagnosis, a person-centred approach should maintain that the person is NOT a faceless collec-
tion of symptoms, but an individual in continuity with his environment, the past, present and future.
Care planning should be a team effort between the person living with dementia, professionals, and,
most of all, carers. An approach of seeking out what a person can do, rather than what he or she can
do, can drive an attitude of enablement, but this is not just in physical health, but also in domains, for
example social networks, where a promotion of upholding of human rights is just one of the many
things which can be done after diagnosis; this is in keeping with the international approach of ‘commu-
nity based rehabilitation’.
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4. Details of the afternoon seminar
No one part of the health and social care systems operates in isolation.
On 15 September 2016, the influential King’s Fund published its report entitled “Social care for older
people: Home truths” (http://www.kingsfund.org.uk/publications/social-care-older-people).
The King’s Fund on its blog:
“The picture that emerges is of social care providers under pressure, struggling to retain staff,
maintain quality and stay in business; local authorities making unenviable choices about where to
make reductions; a complex set of causes of delays in discharging older people from hospital; and
the voluntary sector keeping services going even when funding was curtailed.”
And yet the goal of enhancing health and promoting wellbeing, most agree, could be to advance inde-
pendence wherever possible, for example through the intelligence of use of assistive technology.
But this means addressing difficult issues such as the future viability of care homes, the adequate provi-
sion of domiciliary care and respite services, or whether the demands on acute hospitals mean that in
reality person-centred care goes out of the window.
There have been been several promising examples of enhancing health in care homes from the “new
models of care” strand of the work of NHS England. Likewise, there have been several outstanding
examples of residential care homes, with quite remarkable ways of promoting wellbeing (e.g. choirs) –
what has been traditionally called in the literature ‘meaningful activity’.
Of recent note have been the ‘sustainability and transformation plans’.
Ewan King, the Director of Business Development and Delivery at the Social Care Institute for
Excellence (SCIE), in a blogpost dated 28 September 2016 writes (https://socialcare.blog.gov.
uk/2016/09/28/prevention-is-better-than-cure-tips-for-effective-sustainability-and-transforma-
tion-plans/):
“Co-produce plans with local citizens and wider stakeholders across the community, voluntary
and care sector. They bring insight into what actually works, plus resources to deliver. In Leeds
for instance, the deep involvement of local citizens, social care and voluntary providers in shap-
ing the STP has ensured that a vision for integrated health, care and support is more prominent.
This approach is not universal.”
There has, however, been a growing realisation that co-production can mean less about citizenship and
social movements but more about marketing.
There has been a reluctance to address the issue of when people with dementia transition from living
as well as they can with the condition to preparing for “a good death”. The reasons why dementia is not
considered a terminal illness has had profound consequences for the organisation of services.
It is important to share knowledge from different care settings and approaches, such as the hospice
movement, but also important to realise that each care environment offers unique strengths and oppor-
tunities.
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5. Programme of the afternoon seminar
I am delighted at the range and high calibre of my speak-
ers, whom I have invited and request to talk around the
following topics.
The general theme of the afternoon is a person-cen-
tred integrated approach to dementia care and
support.
The afternoon has been designed to encourage open and
inclusive debate. The event itself is free. Although all plac-
es have been taken up, it is not too late to join the waiting
list.
The delegate list is sensational. They include advocates
living with dementia, carers, leads in acute hospital
dementia care, commissioners, clinical nursing special-
ists, researchers in social care, social work practitioners,
general medical physicians and psychiatrists, healthcare
consultants, leads in charity, specialists in personalisa-
tion, technologists, leads in social enterprises, care home
leads, and experts in dementia education.
Detailed programme
2.00
Introduction
Lisa Rodrigues
2.10
Preventing excess disability through psychological ap-
proaches: a clinical psychologist’s view
Reinhard Guss
2.25
Co-production, rights and citizenship
Alison Cameron
2.50
Technology, the future and supporting well
Maneesh Juneja
3.10
Acute hospitals and caring well: a clinical nursing special-
ist’s view
Lucy Frost
3.30
Break (afternoon tea and biscuits; networking)
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6. 3.50
Acute hospitals and caring well: a physician’s view
Avinash Sharma
4.10
Care homes and promoting wellbeing
Yvonne Manson and Joe Walker
4.30
Hospices and dying well
Sarah Russell and Marie Cooper
4.50
Living alone at home with dementia
Wendy Mitchell and Jo Moriarty
5.10
Panel discussion
Details of the panel discussion
I will chair a panel discussion with ALL of the speakers based around the following themes:
5.10 – 5.20
What are the most important ways to make person-centred integrat-
ed care in dementia a reality?
5.20 – 5.30
Who benefits from involving people with dementia and carers in ser-
vices and in research?
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7. Accessibility
The Arlington Centre has a fully accessible lift and a stair li ft which provides step-free access
to the conference centre. There are also adapted toilets available on both the ground and lower
ground floors.
Nearest banks / cash machines:
Barclays, 193 Camden High Street, London NW1 7PJ HSBC, 246 Kentish Town Road, London
NW5 2BS
Local amenities
Mainline stations: Camden Road, King’s Cross St. Pancras and Euston
Nearest tubes: Camden Town and
Mornington Crescent (Northern line)
Car parking: Curnock Estate car park, 38 – 40 Pratt Street, London NW1 0LY (a few minutes
walk away from Arlington). There are also metered car parking spaces available in local streets.
Some reviews of “Living better with dementia: good practice and innovation for the future” (Jessica Kingsley Publishers,
2014)
“Shibley Rahman follows his first brilliant book on dementia with this fascinating publication, containing insight and empathy in equal measure. This book
will help readers - health professionals and the public alike - to understand people in their lives with dementia, guiding you through everything you ever
wanted to know about dementia and could possibly want to ask. Shibley guides you through the challenges of caring for people and living with dementia. He
doesn’t shy away from the topics that are uncomfortable, but he also gives space to examples of good living and practice that leave the reader with hope and
positivity.”
Jenni Middleton, editor, Nursing Times
“I congratulate Shibley on writing a book that brings together so many of the challenges facing people who are living with dementia, their families, and pro-
fessionals from many different disciplines, and takes them forward in a critically thoughtful way. This is a book that truly points the way to a future where
living better is a reality for everyone affected by dementia.”
Beth Britton, Freelance Campaigner, Consultant, Writer and Blogger
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