Article

Dementia
0(0) 1–10
ABC model: A tiered, ! The Author(s) 2019
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DOI: 10.1177/1471301219838086
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support for families

living with dementia
(Innovative Practice)

Zena Aldridge , Alistair Burns and

Karen Harrison Dening
Dementia UK, London, UK

Abstract
Services for people with dementia and their families in England are commissioned with a lack of
integration and an inconsistent approach creating gaps in service provision. Therefore, families
affected by dementia are not receiving the appropriate care in a timely manner and often access
support at crisis point. This reactive and crisis driven approach to care is costly financially and can
have a negative impact and quality of life of those affected. The ABC model offers an adaptable
framework that can inform service provision and improve opportunities to create seamless
peri- and post-diagnosis dementia services for families affected by dementia.

Keywords
Admiral Nurses, case management, dementia, family carers, post-diagnosis support

Background
Dementia is a complex disease which brings substantial costs to individuals, families
and society as a whole. In general, dementia can have a significant negative impact on
the physical health, social needs, emotional wellbeing and relationships of the person

Corresponding author:
Zena Aldridge, Dementia UK, 7th Floor, One Aldgate, London EC3N 1RE, UK.
Email: zena.aldridge@dementiauk.org
2 Dementia 0(0)

with dementia and their families, although not all individuals and their families are affected
this way.
Dementia and Alzheimer’s disease are now the leading cause of death in England and
Wales, accounting for 12.0% of all deaths registered in 2016, up from 11.6% in 2015 (Office
for National Statistics, 2017). Alongside managing the progressive nature of dementia, the
majority of people with dementia have co-morbid conditions which impact on their complex
and changing needs that require regular review over many years and so benefit from care
coordination (National Institute of Clinical Excellence [NICE], 2016, 2018; Organisation for
Economic and Cooperation Development [OECD], 2015).
Caring for someone with dementia can impact on the physical, psychological and mental
wellbeing of carers, relationships within the family and wider community and also affects
social functioning and financial stability (Alzheimer’s Research UK, 2015). Without support
to redress some of the negative effects of caring for someone with dementia there is an
increased risk of premature transition of the person with dementia into nursing care due to
carer burden (Brodaty & Donkin, 2009; Etters, Goodall, & Harrison, 2008).
It is important to recognise that as the population ages, and family lifestyles and struc-
tures change, this may impact on the sustainability of unpaid care which is a vital compo-
nent of the health and social care economy (OECD, 2015; Prince et al., 2014). It is predicted
that over the next 20 years there will be increasing numbers of dependent adults over 85
years old with dementia and increased comorbidities. It is also predicted that there will be a
reduced number of adult children providing care as the retirement age further extends and
older spousal carers will be living with increased disability and ill health (Kingston, Comas-
Herrera, & Jagger, 2018). Consequently, this may place further pressure on systems that are
already struggling to cope with demand, thus strengthening the case for improved family
focussed support.
There is limited evidence of the cost effectiveness of supporting family carers of people
with dementia. Whilst over recent years there has been a growing awareness of dementia and
its effects, there has been limited attention and investment on care that supports families
affected by dementia. This is despite the growing demand that care and support places upon
not only on individual families but the health and social care systems as a whole.
However, The New York University Caregiver Intervention (Mittelman, Haley, Clay, &
Roth, 2006) and the adaptation of the model in Minnesota (Foldes & Hall Long, 2014)
demonstrated that offering enhanced support to carers of people with dementia was cost
effective, improved quality of life and delayed transfers of care. The model included indi-
vidual counselling for carers and family sessions provided on an ongoing basis that enabled
carers to be better equipped to cope with the behavioural symptoms and changes associated
with the progression of dementia (Foldes & Hall Long, 2014). Evidence suggests that
person-centred and multi-component interventions offering a range of services can decrease
burden, improve quality of life and enable caregivers to provide care for longer periods at
home prior to institutionalisation (Etters et al., 2008).

Fragmented services
It is acknowledged that current services in England are fragmented, disjointed and often
hard to access. Coordination of care and access to support has been highlighted as a priority
by and for people with dementia, families and stakeholders (NICE, 2018; OECD, 2015).
Services are currently designed to provide either health or social care to either the person
Aldridge et al. 3

with dementia or the carer which can be inhibitive of considering care needs in a family or
relational context and how family members needs invariably impact upon one another.
Similarly, health and social care services may often be commissioned in isolation as
opposed to being collaborative. This often leads to a poor understanding of each other’s
roles in supporting the collective complex needs of the family. Such needs will often span
multiple health conditions, not only singular diseases, elements of care are often provided
but significant gaps remain, causing people with dementia and their families to reach a crisis
point receiving reactive as opposed to proactive and preventative care.

Policy
Over recent years policy has moved to supporting people to live at home or in sheltered
housing with an ever-growing reliance on informal care and support (OECD, 2018).
There are plans to continue providing healthcare in communities utilising an integrated
approach that aims to see improved collaboration between health and social care inclusive
of combined budgets, offering service provision to meet needs in a more person-centred
manner. The Five Year Forward View was published in 2014 (National Health Service
[NHS] England, 2014) with what were termed ‘Vanguard’ sites established in 2015. In 2016,
NHS organisations and local councils came together to form 44 sustainability and transfor-
mation partnerships covering the whole of England and were tasked to set out proposals to
improve health and social care in their designated areas. Some sustainability and transforma-
tion partnerships are already further evolving to become integrated care systems where there
will be a more collective approach to shared responsibility for the services that they provide.

Model development
Once dementia is diagnosed, often within secondary mental health services, most ongoing
dementia care becomes the responsibility of primary care practitioners. However, there is
often a lack of accessible specialist support available to meet the needs of families affected
by dementia within primary care. There is a need for a model that is integrated to fill the
gaps that exist between primary, community and secondary health services, social care and
third sector organisations to ensure complex needs are met.

Norfolk Admiral Nurse Service pilot

Norfolk is a rural English county and has an ageing population with 216,300 of the 898,400
population being over 65 years old (Projecting Older People Population Information
[POPPI] System, 2016) This equates to one in four people being over the age of 65 years
whereas the national average is one in six. It is estimated that 15,318 (POPPI, 2016) people
over 65 are living with dementia in Norfolk.
A two-year pilot of the Norfolk Admiral Nurse Service was funded by the People’s
Health Trust (lottery funding) and delivered by Age UK Norfolk (a charity that supports
people over 50) and Norfolk and Suffolk Foundation Mental Healthcare Trust in partner-
ship with Dementia UK (the charity that provides Admiral Nurses for families affected
by dementia).
The service consisted of one full-time Admiral Nurse Clinical Lead and 1.65 full-time
equivalent Admiral Nurses (Admiral Nurses are specialist nurses who work with families
4 Dementia 0(0)

affected by dementia), the pilot commenced in 2013. The Admiral Nurse Service was sited in
a rural area of Norfolk where it was estimated that there was a high prevalence of people
living with dementia, despite diagnosis rates being poor. There was limited service provision
for families affected by dementia in the area, and what existed was fragmented, disjointed
and unable to meet the demand with a synapse existing between mental health and primary
care provision.

Referrals and case management

The Norfolk Admiral Nurse Service moved away from the traditional Admiral Nurse model
which had historically been embedded in mental health and community services into a
primary care-based model and was rolled out across seven GP practices.
The demand in the area was unknown (but anecdotal evidence from the participating
practices was that there was significant unmet need) so an open referral system was agreed.
This enabled referrals to come from health and social care professionals, third sector organ-
isations and families themselves.
From the outset there was significant demand with a high volume of referrals from both
professionals and families which required an efficient approach. A telephone triage system
was established whereby the Admiral Nurse Clinical Lead would contact all families referred
to the service and offer a telephone triage assessment using the Admiral Nurse Assessment
Framework (Harrison Dening, 2010). This enabled the identification of unmet needs and
risks for both the person with dementia and their carer(s), ensuring those with the greatest
need were prioritised and triaged to offer the most appropriate support to meet their needs.
It soon became clear that there were three distinct groups of carers being referred to the
service with varying levels of need, those with:

• High-level complex needs – Often at/or near crisis point with multi-faceted areas of need
requiring intensive clinical case management.
• Mid-level moderate needs – Families needing specialist dementia advice, education and
support without which their situation would deteriorate and escalate into high-level com-
plex needs.
• Low-level non-complex – Families needing general information and advice that required
minimal intervention.

Those triaged with high-level needs were allocated to an Admiral Nurse for a full face-
to-face Admiral Nurse assessment and, if appropriate, accepted onto the caseload for
ongoing case management. The service utilised the Admiral Nurse case management
model (Harrison Dening, Aldridge, Pepper, & Hodgkison, 2017) due to the complexity of
needs that often required intensive intervention from multiple services across health and
social care resources (Koch et al., 2012).
In order to establish effective onward referrals for those families that required support
but did not have ongoing complex needs other existing services were mapped to a tiered
model to reflect the varying levels of need (see Figure 1). It became apparent that there was a
significant gap in service provision to meet moderate levels of need (Tier 2). There was
limited scope for transition between high-level and low-level services as needs changed.
Therefore, service users with moderate needs who no longer required clinical intervention
Aldridge et al. 5

Figure 1. (Aldridge & Findlay, 2015).

in Tiers 3 and 4 could not be switched to a Tier 2 service, and equally service users receiving
support in Tier 1 who had moderate needs could not be moved up to Tier 2.
It was identified that improving capacity within Tier 2 services would enable a more
efficient service model and pathway. This led to the creation of an integrated tiered
model of peri- and post-diagnostic support (see Figure 2) that utilised both commissioned
and non-commissioned services; inclusive of health, social care, charitable, voluntary and
community-based resources.

Outcomes for families and the health and social care system
The aim of the Norfolk Admiral Nurse Service was to improve health and social care
outcomes of families affected by dementia by coordinating care and enabling access to
the most appropriate services pertinent to their identified need and in a timely manner
following assessment (Harrison Dening et al., 2017). A mixed methods service evaluation
was carried out, using both qualitative and quantitative data collection. The qualitative
component comprised of interviews and questionnaires for both service users and profes-
sionals. The quantitative data were extracted from information relating to 112 of 230
referred cases during the first 10 months of service delivery. The combined qualitative
and quantitative data identified that the approach had a positive impact, resulting in:

• Improved physical, emotional and mental wellbeing for people with dementia and
their carers.
• Improved identification and diagnosis of dementia.
• Improved anticipation of deterioration and care coordination at end of life.
• Reduced and delayed transitions into residential and nursing care.
• Reduced inappropriate hospital admissions (both acute and mental health).
• Improved communication between services.
6 Dementia 0(0)

Figure 2. (Aldridge & Findlay, 2015).

As a result, there were positive benefits for health and social care services with potential
savings in excess of £426,000 over a 10-month period (Aldridge & Findlay, 2014).
These outcomes also reflected some of the key objectives of current policy being developed
in the UK.

Transferability of the model and current commissioning arrangements

A simplified abbreviated version of the model was developed (see Figure 3) and through
subsequent discussion with Professor Alistair Burns (Professor of Old Age Psychiatry &
Manchester, National Clinical Director for Dementia and Older People’s Mental Health at
NHS England and NHS Improvement) was named the ABC model (Advice, Bespoke and
Complex) to match level of need with the appropriate intervention. This model enables a
locality to differentiate the varying roles and services when developing local services. The
tiered model aims to support commissioners and clinicians in identifying the services that are
required to provide robust peri-/post-diagnostic support services and has the flexibility to
distinguish the varying levels of need of families needing support.
Further pilots of this tiered approach have been trialled in Norfolk and elsewhere in
England and have proved to be effective in determining roles and responsibilities, encour-
aging previously fragmented resources to work more collaboratively in supporting people
with dementia and their carers. Dementia UK is currently working with host organisations
across the country to replicate the model and to meet locally defined needs. One of the first
Aldridge et al. 7

Figure 3. A – Tier 1 Advice and information provided in generalist information and advice services. B –
Tier 2 Bespoke information and support relating to aspects of dementia care. C – Tier 3 Complex clinical
care needs in relation to dementia and co morbidities provided by Admiral Nurses.

sites to replicate the model of care was in the North of England and was established by joint
health and social care commissioning arrangements encouraging collaborative working with
six partner organisations. A recent evaluation of this service highlighted clear benefits of
bringing together Admiral Nurses and Dementia Advisers within a single workforce (Piercy,
Fowler-Davis, Dunham, & Cooper, 2018). Shared clinical processes including a single
assessment and the triage process together with seamless transfer between Admiral
Nurses and Dementia Advisors caseloads enabled resources to be targeted in a timely and
appropriate manner (Piercy et al., 2018).

Conclusion
Peri- and post-diagnostic support must be responsive to the person with dementia and their
families. Health and social care commissioners have a duty to provide equitable, appropriate
support throughout the dementia pathway. The ideal of a named person throughout the
progression of the disease is fraught with difficulties due to the unpredictable nature of the
condition, and the propensity for services to be commissioned on short-term contracts with
a transitional workforce or, only a commissioning services for fragmented parts of the
dementia trajectory. Therefore, a pathway that recognises the changing complex needs of
families may be the compromise that prevents gaps developing between services offering
consistency and enabling an integrated and collaborative approach.
The ABC model is an adaptable, clinically effective, efficient and transferable care model
which has the potential to bring benefits to people with dementia and their families through
tailored bio-psycho social relationship-based care refraining from the ubiquitous one size fits
all approach. It has the capacity to utilise existing service provision and offer an integrated
approach to supporting families affected by dementia with health and social care needs, this
8 Dementia 0(0)

approach is innovative and congruent with the vision of coordinated peri- and post-
diagnostic support for families affected by dementia.

Recommendations for practice and research

There is a propensity to commission services on short-term contracts to multiple providers
which creates fragmentation and lack of understanding of the roles and responsibilities of
each organisation, this is neither a sustainable (given the predicted increased prevalence of
dementia) nor an effective approach and prevents the exploration of efficacy through research:

• Dementia is a long-term palliative care condition and services need to reflect this, recog-
nising the complexity of the condition and its effects from peri-diagnosis until post
bereavement.
• There is a need for longer term investment to provide services that deliver an effective,
equitable pathway that encourages providers to work together as opposed to in compe-
tition and reflects the varying needs of families affected by dementia to minimise gaps
and duplicity.
• By adopting the ABC model there are opportunities for sizeable longitudinal savings to the
health and social care economy which have yet to be fully explored. Providing stability will
offer improved opportunities for research in this key area which would be welcomed.

Acknowledgements
Many thanks are offered to the co-authors for their time in supporting this work and to Dementia UK.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or
publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or
publication of this article: The original pilot service was funded by the Peoples Health Trust and
Norfolk and Suffolk Foundation Trust. There has been no funding for production of this manuscript.

ORCID iD
Zena Aldridge http://orcid.org/0000-0001-5982-8070

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Zena Aldridge has worked in health and social care for over 20 years, Zena became a
Registered Mental Health Nurse in 2003 and went onto complete her Master’s degree in
Mental Health in 2012 at the University of East Anglia. Passionate about improving the
10 Dementia 0(0)

care of people with dementia and their families, she held a variety of posts before taking the
position of Norfolk’s first Admiral Nurse in April 2013. She joined Dementia UK in 2016
as a Service Evaluator and Senior Consultant Admiral Nurse before commencing in her
current post – Admiral Nurse Research Fellow in May 2018 at which time she also began a
full-time PhD at de Montfort University.

Alistair Burns is a professor of Old Age Psychiatry at The University of Manchester and an
Honorary Consultant Old Age Psychiatrist in the Greater Manchester Mental Health NHS
Foundation Trust. He is the National Clinical Director for Dementia and Older People’s
Mental Health at NHS England and NHS Improvement. He graduated in medicine from
Glasgow University in 1980, training in psychiatry at the Maudsley Hospital and Institute of
Psychiatry in London. He became the Foundation Chair of Old Age Psychiatry in
The University of Manchester in 1992, where he has variously been Head of the Division
of Psychiatry and a Vice Dean in the Faculty of Medical and Human Sciences, with respon-
sibility for liaison within the NHS. He set up the Memory Clinic in Manchester and helped
establish the old age liaison psychiatry service at Wythenshawe Hospital. He is a Past
President of the International Psychogeriatric Association. He was Editor of the
International Journal of Geriatric Psychiatry for 20 years (retired in 2017) and is on the
Editorial Boards of the British Journal of Psychiatry and International Psychogeriatrics.
His research and clinical interests are in mental health problems of older people, particularly
dementia and Alzheimer’s disease. He has published over 300 papers and 25 books. He was
made an honorary fellow of the Royal College of Psychiatrists in 2016, received the lifetime
achievement award from their old age Faculty in 2015 and was awarded the CBE in 2016 for
contributions to health and social care, in particular dementia.

Karen Harrison Dening has over 40 years’ experience in dementia care in a variety of settings
and contexts. For the past 12 years she has worked with Dementia UK and Admiral
Nursing and is now the Head of Research and Publications. She gained a PhD at the
University College London focusing on advance care planning and end-of-life care in
dementia. She holds honorary academic positions at the Universities of Nottingham,
Liverpool and De Montfort, Leicester.