BPS Position statement on dementia: draft for consultation
BRITISH PSYCHOLOGICAL SOCIETY
DEMENTIA ADVISORY GROUP
POSITION STATEMENT ON DEMENTIA
1
BPS Position statement on dementia: draft for consultation
It’s the worst experience I’ve had in my life – I’m just cut off from everything.
Dementia is an illness that reduces the ability of the brain to function. Consequently the effects
of dementia are primarily psychological in nature, and are expressed within a social context.
Psychologists offer a unique perspective and range of expertise in understanding dementia and
supporting people affected by dementia. They combine specialist knowledge of cognition and
behaviour with a psychosocial focus that emphasises the personal and social impact of the
condition. The British Psychological Society has prioritised dementia as part of its overall focus
on health and well-being, highlighting the contribution that psychologists make in this field and
reflecting the increasing emphasis on dementia as a social, political and economic priority.
Dementia is an umbrella term for a large number of syndromes involving neurodegenerative
changes in the brain, including Alzheimer’s disease, vascular dementia, and over 100 other
rarer conditions. These neurodegenerative processes result in progressive decline in cognitive
functions such as memory, language, attention, concentration, visual perception, planning and
problem-solving, and sometimes in motor function. The resulting breakdown of cognition
affects the practical ability to manage everyday activities, and often occurs at a time in life
when people are also experiencing other changes in health, lifestyle and social contact. It has a
profound psychological impact on the person, affecting sense of identity, behaviour, mood,
well-being and all aspects of social and adaptive functioning.
Dementia does not just affect people experiencing this form of cognitive decline. It also has a
major impact on their families and friends, and ultimately affects everyone in society. There is
currently no cure for any form of dementia. As awareness of the personal and social impact of
dementia increases, so does the focus on its prevention, treatment and management.
Psychologists have been at the forefront of developments that have broadened our
understanding of dementia and how it affects people, and provided new and different ways of
thinking about the condition. They have contributed to the move from a narrow focus on
disease to conceptualising dementia in terms of disability, and have highlighted the importance
of focusing on the person rather than the disease, leading to an emphasis on what helps people
to live well with dementia.
Psychologists have been, and continue to be, instrumental in providing the skills and evidencebase for good psychological care for people living with dementia and those who support them,
and in ensuring that care is offered in a way that is sensitive to the person’s lifestyle and family
and community context. In health and social care, psychologists are key members of multidisciplinary teams, and are involved in the assessment, diagnosis, care and support of people
with dementia and their families. These services aim to support people with dementia and their
families through timely diagnosis, post-diagnostic support and adjustment, progressive and
unpredictable loss of functioning, adjusting to help at home, changing lifestyle needs,
hospitalisations, housing support, care home admission and complex end of life issues.
Psychologists have played a key role in helping to understand the impact of care settings and
the way care is provided on the emotional well-being of people with dementia, and developing
strategies to change negative cultures of care. Psychologists also play an important role in
helping others understand dementia, and in assessing quality of life and outcomes for people
with dementia, their families, care staff and service systems. Psychologists are instrumental in
the growing movement of inclusion of people with dementia and in supporting their active and
2
BPS Position statement on dementia: draft for consultation
meaningful involvement in decision making and service planning, and contribute to the
reduction of the stigma surrounding dementia and the development of dementia-friendly
communities.
Research carried out by psychologists contributes to our understanding of the nature and causes
of different types of dementia and the experience of living with dementia, develops and tests
new or improved ways of supporting people with dementia and carers of people with dementia,
and seeks to provide evidence about the potential for preventing, or reducing the risk of
developing, dementia.
Risk and preventive strategies
Most people who develop dementia experience symptoms late in life, and a complex range of
factors including genetic profile, environment and lifestyle contributes to determining the
individual risk of developing the condition. Some rare forms of young-onset dementia are more
strongly genetically-linked, and people with Down’s syndrome are at particularly high risk of
developing Alzheimer’s disease at an early age. However, for most people, it seems that
lifestyle factors play some part in determining risk.
Reducing risk with the aim of preventing or delaying the onset of dementia is increasingly
considered to be an important goal. Environmental and lifestyle factors may contribute to
triggering neurodegenerative processes, and lifestyle and behaviour choices may affect the
speed of decline. Therefore, changes in behaviour and lifestyle could help to reduce the risk of
developing Alzheimer’s disease or vascular dementia in later life. The neurodegenerative
changes that lead to these forms of dementia can begin many years before symptoms become
evident, and adopting healthier behaviours could help to counteract this process. It has been
estimated that up to one-third of cases of Alzheimer’s disease are attributable to the effects of
potentially-modifiable factors, such as diabetes, midlife hypertension, midlife obesity, physical
inactivity, depression, smoking and limited educational opportunity early in life. Social
initiatives aimed at tackling inequality and deprivation, increasing activity levels, and
improving general health and fitness in the population can potentially reduce the prevalence of
dementia.
Factors thought to protect against developing dementia include social engagement, physical and
cognitive activity, and a healthy diet. Alongside medical factors, therefore, it is important at an
individual level to target psychosocial and lifestyle factors that may reduce risk. This process
requires a psychological understanding of how to communicate essential health messages and
how to motivate people to adopt and maintain healthier behaviours. The interventions aimed at
prevention of dementia that are most likely to prove effective are those based on psychological
theories of motivation and behaviour change.
While prevention is an important goal, the need to provide high-quality psychological care and
support for those currently affected by dementia is equally urgent.
3
BPS Position statement on dementia: draft for consultation
The experience of dementia
Each individual’s experience of dementia is unique. The nature of this experience is shaped
both by the nature of the progressive neurodegenerative changes that characterise the person’s
dementia and by the person’s life experience, personality, resources, and family and social
context. Dementia is a progressive condition, and the nature of the experience, along with the
resulting needs, will change over time. The trajectory and rate of change varies considerably
and can be influenced for example by other physical health conditions.
Understanding dementia from the perspective of social psychology has had a major impact on
how the condition and those experiencing it are viewed. It is now recognised that people living
with dementia are active agents and that it is important to support them in decision-making
wherever possible. Maintaining agency, identity and connection is a key focus as dementia
progresses. When it becomes harder to remember and communicate important information or
access familiar and personally-meaningful experiences, there is a risk that the person will
experience a sense of isolation and dislocation, while lacking the resources to protect against
this. It is vital that carers play an increasing role in supporting and maintaining links with key
aspects of the person’s individual, social and cultural identity, including personal preferences,
wishes, memories and experiences. This helps to engender trust, establish a sense of security
and comfort, and maintain well-being.
The family members and friends caring for a person with dementia also face considerable
psychological challenges. Caregiving can bring tremendous personal rewards, but it can equally
be extremely demanding and stressful. It is a long-term commitment over a prolonged period of
decline with changing challenges and needs, and may be accompanied by a sense of loss and
grief. Carers’ health may be compromised by the demands of caring, and so they too require
support.
Psychological aspects of dementia care
People affected by dementia require high-quality psychological care and support that enables
them and their families to understand what is happening and to learn to live well with dementia.
Making an accurate diagnosis of the type of dementia together with an appropriate assessment
of severity and progression, and offering effective care and support for people with dementia
and their carers, are skilled endeavours requiring the integration of multiple perspectives,
including a psychological perspective. Individualised assessment, formulation and case
management help to understand the complex interplay of factors affecting the extent to which
each individual is able to live well with dementia, and guide the provision of person-centred
care.
Psychological assessment
Receiving a diagnosis of dementia is a life-changing event. Dementia is a terminal diagnosis,
and the nature of dementia undermines the expression of identity, challenges the sense of
meaning and purpose in life, compromises social support, and reduces the ability to live
independently. For the person affected by dementia, becoming aware of significant changes in
memory or everyday ability creates a psychological dilemma about whether or not to seek help.
Making the decision to acknowledge difficulties and seek help can be a frightening experience.
Opting to carry on as if nothing has changed may enable the person to avoid some of the
emotional distress, but can lead to increased conflict with family members and increased levels
4
BPS Position statement on dementia: draft for consultation
of stress. It is vital that health professionals are sensitive to the psychological impact of what
people are experiencing, whilst providing an accurate and timely assessment.
Psychologists are key members of multidisciplinary teams engaged in diagnosis of dementia.
Where an assessment for suspected dementia is indicated, the individual and family need to
understand the nature, purpose and possible outcomes of the assessment if they are to make an
informed decision about whether to proceed. Pre-diagnostic counselling is often an important
step in which concerns can be discussed and information offered. Once informed consent for
diagnostic assessment has been obtained, a neuropsychological assessment carried out by a
psychologist working as part of a multi-disciplinary team provides essential information that
can help to clarify whether dementia is present and if so to determine the specific type and
severity of dementia. This assessment involves asking the person, where possible, to complete a
set of tasks that evaluate aspects of mental ability, such as memory, attention, language and
visual perception, in order to identify the pattern of strengths and difficulties. It also involves
gathering a comprehensive account of the way in which the person is functioning in daily life
and how this may have changed, and information about the person’s circumstances,
relationships and general health. The resulting information is used to determine the most likely
reasons for any difficulties, particularly where the diagnosis is uncertain. Equally important, it
contributes to a detailed formulation of the person’s situation and needs, and makes it possible
to identify opportunities for building on the person’s strengths so as to develop coping
strategies.
Psychologists also train other professionals in the use of screening tests that can highlight a
need for more detailed assessment, and simpler cognitive tests that can help to confirm a
diagnosis where the pattern of difficulties is well-established.
Following assessment, communication of the diagnosis must be done sensitively, with
sufficient time allowed for discussion and the opportunity for follow-up appointments.
Knowledge gained through the processes of pre-diagnostic counselling and assessment can help
to ensure that the discussion and the explanations given are individually-tailored, that the
person’s wishes about what to be told and how are respected, and that any ongoing support
offered to facilitate adjustment to living with the condition is appropriate to the needs of the
individual and family. Communicating a diagnosis of dementia is challenging for health
professionals, and staff engaged in this work benefit from psychological support and
supervision.
As dementia progresses, further psychological assessment offers an important means of
monitoring progression, identifying and responding to changing needs, and ensuring timely and
appropriate support. Detailed assessment is sometimes needed to help distinguish whether
particular issues are due to dementia or result from other health needs. Psychologists can help
families and care staff to understand that care must be adapted as the dementia progresses, so it
is vital that there is input from psychologists throughout the dementia trajectory. Psychologists
also play an important role in helping others understand dementia, and in assessing quality of
life and outcomes for people with dementia, their families, care staff and service systems.
Current policy emphasises the importance of earlier diagnosis of dementia, and of diagnosing a
greater proportion of people with the condition. However, a diagnosis is most useful when it
points to a suitable, and available, form of treatment or post-diagnostic support.
Pharmacological treatments for dementia are currently very limited, and available to only a
proportion of those diagnosed. Provision of psychological support and access to evidence-based
5
BPS Position statement on dementia: draft for consultation
psychological and psychosocial interventions can help to promote adjustment, maintain
everyday functioning and alleviate psychological distress. Insufficient attention has been paid
to ensuring that people with dementia and carers can access these kinds of support, which are
only available to a small percentage of those who might benefit. There is an urgent need to
address this ‘psychosocial intervention gap’ and to identify ways of ensuring that people with
dementia and carers receive appropriate psychological support.
Psychological support and interventions in the early stages of dementia
People cope with dementia in different ways. Some acknowledge and accept the diagnosis,
confront its implications, and actively make changes that can help them to manage the
condition better. Others cope by trying to keep things the same and taking one day at a time.
Some people may be unable to understand the diagnosis and its implications, and a small
proportion of people diagnosed with early-stage dementia seem not to acknowledge that they
are experiencing any particular difficulties or that there is anything wrong. This apparent lack
of awareness may in some cases be due to the neurological effects of the illness, but it can also
reflect the way in which people respond to the emotional threat that dementia represents. These
different ways of coping mean that psychological support must be based on a formulation of
individual needs and tailored to individual situations.
For many people, advice on managing the symptoms and the way in which these affect
everyday activities is important. This might include, for example, information about practical
strategies for dealing with memory problems. Psychological interventions can play a valuable
role in helping people to process some of the difficult emotions associated with a diagnosis of
dementia, and thus to adjust and cope. These interventions include therapies such as selfmanagement and support groups and systemic, cognitive behavioural and other therapies.
Cognitive rehabilitation to support engagement in everyday activities and promote
independence can also promote adjustment and boost confidence. Psychologists encourage
carers and care staff to understand the importance of strategies that can help to maintain a sense
of identity and connection when memory for important people, events and experiences fades,
such as the timely development of life story books. Psychologists also support access to a
range of other therapies, including peer support and counselling, and creative activities such as
music, art and dance, that can enhance well-being.
Psychological support and interventions as dementia progresses
As dementia progresses, psychological and psychosocial interventions continue to offer
important benefits. The selection of appropriate options is based on formulation from a positive
behaviour support perspective that considers all aspects of the person’s life, including health,
social networks, and the physical environment. Intervention approaches such as reminiscence
are designed to increase social engagement, while cognitive stimulation may help to support
cognitive functioning. Development of a programme of individually-tailored activities, and the
use of sensory stimulation, can promote well-being.
Some people with dementia will make the transition to living in a residential home or nursing
home. About one-third of people with dementia live in care homes, and about 70% of care
home residents have dementia. Psychological support for both the person with dementia and
any family members involved can help to ease the transition and allow a smooth adjustment in
these very challenging circumstances. Training, psychological support and supervision for staff
6
BPS Position statement on dementia: draft for consultation
in residential settings helps to develop their understanding about ways of providing care that is
person-centred, rather than institutional.
People with dementia, especially those living in residential care settings, may show high levels
of distress or engage in behaviour that others find difficult. Frequently the response to this has
been to prescribe anti-psychotic medication, despite evidence that it is ineffective in many cases
and may also have harmful effects. However, it is now recognised that the use of such
medication needs to be reduced and if possible eradicated entirely. A psychological approach is
based on understanding the meaning and function of behaviour. Rather than representing such
behaviour simply as an inevitable symptom of an underlying illness, it is viewed as a response
to distress or as challenging the system surrounding the person to offer a more effective and
more acceptable alternative. These approaches, based on a framework of positive behaviour
support, are founded on the premise that behaviour occurs for a reason, serves a particular
function, constitutes a response to the internal or external environment, reflects an underlying
unmet need, and is influenced by the pattern of cognitive strengths and weaknesses. For
example, a memory of trauma experienced early in life may be reactivated and relived, resulting
in reactions that appear challenging to caregivers. Similarly, misperception of features in the
physical environment may trigger hallucinations or delusions, resulting in behaviour that
appears hard to explain and manage. Behavioural approaches involve developing an
understanding of why the behaviour occurs, and what triggers or maintains it. This
understanding leads to the identification of ways of preventing the behaviour happening or of
managing it when it does occur. This kind of approach is underpinned by an acceptance of the
importance of cultural and other values, and there is an emphasis on preventative strategies that
enable the person to be fully understood. Psychologists contribute to training care staff in
implementing positive behaviour support approaches and can provide specialist expertise where
this is needed. Staff providing care for people with dementia face many challenges and, in
addition to skills training, need effective support and supervision, with a focus on maintaining
their own psychological well-being. Psychologists are well-placed to provide this.
Other health conditions
People with dementia often also have other physical and mental health conditions, and it is
important that these are recognised and appropriate treatment offered. People with dementia
should be able to access psychological services and other health services appropriate to their
needs. Provision of effective psychological therapies for issues such as depression or anxiety
requires an understanding of changes in cognition, of the emotional impact of dementia, and of
the context in which people experience and live with dementia, including their attachments and
relationships. Psychological therapists need to be trained to adapt their approach to compensate
for the impact of cognitive changes and to be sensitive to the individual’s wider context.
Management of physical health conditions is important to avoid hospital admission wherever
possible, and psychologists support the provision of high-quality community-based health care.
Where stays in acute hospitals are unavoidable, this can be very difficult unless staff members
are well-prepared to care for patients who have dementia. Psychologists are well-placed to
contribute to training and supporting staff on general hospital wards to provide good-quality
care for patients with dementia and support effective communication of personal needs and
preferences, although this is an area where more resources are needed.
7
BPS Position statement on dementia: draft for consultation
End of life care
Dementia is a terminal condition and as the person becomes more impaired and the end of life
approaches, emphasis is placed on ensuring the person is comfortable, free of pain and able to
experience positive emotions. Caring for individuals who are dying requires the ability to
sensitively observe behaviour and respond to often subtle changes. Care staff can benefit from
psychological support, and family members too may require particular support at such times.
Psychologists can play a role in helping people with dementia and their families to prepare for
end of life, and can support staff and families as needed
Psychological support and interventions for families
Just like people with dementia, family members taking up the caring role cope with this in
different ways. They may have other challenges to cope with, such as physical health problems
of their own, and they may have to combine caregiving with other family and employment
responsibilities. It is important to work with carers and involve them in the process of deciding
what kinds of support will be most useful and when.
Basic information can help carers understand the condition and what to expect, and enable them
to respond in a helpful way to the needs of the person with dementia. Sharing experiences with
other carers in a similar situation can be invaluable. Beyond this, carers often benefit from
detailed advice and training in specific skills that can develop resilience and coping skills,
support their own well-being and that of the person with dementia, and enabling both to
maintain a good quality of life. This kind of support may be needed at any point in the journey
through dementia, depending on individual needs and circumstances, but should always be
available at the time of diagnosis and at key transition points such as a move to residential care.
Carers derive most benefit from structured multi-component psychological approaches
provided by skilled and experienced practitioners over a defined period, followed up by
ongoing contact. Key components of these multi-component interventions are support,
information and skills training. Support encompasses emotional support, counselling or
psychotherapy, and development of stress management and self-care strategies. Information
includes developing knowledge about dementia and the support services available, and
understanding the behaviour of the person with dementia. Skills development focuses on, for
example, how to communicate effectively with the person with dementia, how to respond to
distress, how to engage a person who has become inactive or withdrawn, and how to support
meaningful activity and occupation. For some carers, involving the wider family or otherwise
strengthening networks of social support is an important consideration.
Service systems
Dementia affects people from all groups within society. It is vital to ensure that all groups have
equal access to high-quality services and care, and that people with dementia and carers are
fully involved in decisions about their care. Clinical services must be sensitive to people from a
range of abilities, cultures and backgrounds. Services are less accessible for people from black
and minority ethnic groups, who are under-represented in memory clinics, and there is a need to
consider models of service that can improve accessibility. Some groups may require services
tailored to their particular needs; for example, specialist expertise is required to diagnose
dementia in people with intellectual disability and provide appropriate post-diagnostic support.
Psychologists contribute to developing and leading services that are responsive to the needs of
people with dementia and carers.
8
BPS Position statement on dementia: draft for consultation
Possible text boxes (suggested text follows below)

How widespread is dementia?

How many types of dementia are there?

What should staff working with people who have dementia be doing?

What should commissioners commission?

What should commissioners expect as an outcome of an excellent service?

What competencies do registered psychologists have? [awaited]
9
BPS Position statement on dementia: draft for consultation
How widespread is dementia?
It is estimated that there were 773,502 people aged over 65 with dementia in the UK in 2014,
representing 7.1% of the 65+ population1. It is thought that this includes about 15,000 people
from black or minority ethnic groups2.While dementia primarily occurs in those aged over 65,
and prevalence increases with age, dementia can also affect people of working age. There were
thought to be 42,325 people with young-onset dementia (under the age of 65 years) in the UK
in 20131. People with learning disabilities may experience dementia at a relatively young age;
for people with Down’s syndrome, where there is a genetic link to Alzheimer’s disease, the
average age of onset is 55 years.
1. Dementia UK (2014): Alzheimer’s Society
2. Moriarty, J., Sharif, N., & Robinson, J. (2011). SCIE Research briefing 35: Black
and minority ethnic people with dementia and their access to support and services.
(Research Briefings). Social Care Instutute for Excellence.
10
BPS Position statement on dementia: draft for consultation
How many types of dementia are there?
Psychologists have made a major contribution to identifying the different sub-types of dementia
and outlining their characteristics. The most frequent types of dementia are Alzheimer’s disease
(62% of the overall total), vascular dementia (17%) and mixed Alzheimer’s and vascular
dementia (10%). Rarer types of dementia include Lewy body dementia (4%), fronto-temporal
dementia (2%) and Parkinson’s dementia (2%), with over 100 other diagnoses accounting for
the remaining 3% of cases.
11
BPS Position statement on dementia: draft for consultation
What should staff working with people who have dementia be doing?
Staff should:
 Draw on a person-centred approach to dementia care.
 Understand and empathise with the perspective of the person affected by dementia.
 Develop a shared vision, values and foundation for their care approach.
 Develop and follow an agreed, individualised support plan.
 Offer a consistent approach.
 Use effective communication skills and be able to avoid confronting or challenging people.
 Understand that the way in which distress is expressed is often through behaviour that
challenges them to respond in a positive and supportive way.
 View this behaviour as a communication of an unmet need, and respond to it by using a
positive behaviour support approach.
 Access regular training to consolidate and update their skills and knowledge.
 Access reflective practice and support to deal with the emotional labour of working with
people with dementia.
 Offer excellence in end of life care.
12
BPS Position statement on dementia: draft for consultation
What should commissioners commission?
In order to provide a psychologically supportive clinical and social care, commissioners need to
ensure that there is:
 Demographic evidence on which to base decisions.
 A multi-agency dementia strategy that addresses the needs of all communities including
those from BME communities, those with young onset dementia, and dementia in people
with learning disabilities
 A multi-agency care pathway for assessment, diagnosis, interventions and support of
people with dementia.
 A multi-disciplinary approach to assessment and diagnosis and support.
 Prompt access to assessment and diagnostic services.
 Person-centred dementia care, including person-centred responses to distressed or
challenging behaviour.
 An effective care management and review system.
 Prompt access to the full range of medical, psychological, therapeutic and social
interventions.
 Evidence that the community is dementia-friendly and that all hospital and care
environments have dementia champions.
 Support for the person to remain in his/her familiar home wherever possible, with additional
input provided in a timely manner.
 Practical, financial and social support for families and others caring for people affected by
dementia.
 A capable workforce able to deliver excellence in dementia care, who are supported
adequately and have time to develop and practice their skills.
 End of Life care in line with the requirements of the National End of Life Strategy.
13
BPS Position statement on dementia: draft for consultation
What should commissioners expect as outcomes of an excellent service?










Increase in prompt differential diagnosis of the person’s difficulties.
Increase in other conditions being treated promptly.
Increase in accurate diagnosis of dementia.
Increases in the range of diagnoses of dementia being made
Increases in the numbers of people from Black and ethnic minority backgrounds receiving a
diagnosis of dementia
Reduction in levels of challenging behaviour and behaviour that reflects distress.
Increase in quality of life indicators for the person.
Reduction in admissions to nursing and residential care homes and in moves between
placements.
Increased carer support and satisfaction.
Reduction in staff stress.
14
BPS Position statement on dementia: draft for consultation
Additional information
Concluding text/quote - to be added
Contact information – to be added
15