Dementia strategy

Continually striving to provide excellent care for patients with dementia, their family and carers

This strategy sets out the strategic vision for dementia care in London North West University Healthcare NHS Trust (LNWH). It provides clear guidance for the future development of the services we provide. The aim of this document is to build on the progress that LNWH has seen since the introduction of the dementia care strategy in 2013, in the care and services that we deliver to our patients and their carers by focusing on what truly matters to them.

This strategy also supports the Trusts values by continuously improving the quality of care we deliver, with honesty, equality, accountability, respect and team work by putting our patients at the heart of everything we do.

It was developed in partnership with service users and staff who have experience of supporting someone with dementia incorporating the national and local policies guidance and legislation.

The scope of this document is extensive to ensure that the Trust is focussed on dementia in all environments and every team. It covers the dementia pathway review, creation of dementia-friendly environments, evaluation of training and development provision, engagement with service users, carers, families and other providers. It also offers a literature review of current dementia guidelines to ensure that the services are aware of their obligations and the care provided by the Trust is current and regarded as outstanding by both service users and regulators.

Background

Defining dementia

Dementia is an umbrella term that describes a number of conditions that affect the brain causing problems with memory, thinking, language, behaviour and the ability to carry out everyday tasks. All types of dementia are progressive in nature meaning that symptoms will worsen and a person’s need for support will increase over time. However, with the right resources many people living with dementia lead active lives for years following a diagnosis. There is an estimated 850,000 people living with dementia in the United Kingdom (one in six people over the age of 80). Mortality rates for Alzheimer’s disease and other dementias have increased over the last decade. This is in contrast to the other top four leading causes of death – ischaemic heart diseases, cerebrovascular diseases, chronic lower respiratory diseases and lung cancer which have seen mortality rates falling over the last 15 years (Alzheimer’s Research UK). Although dementia is not an inevitable part of ageing, increasing age is the main risk factor. Despite this, younger people can also be affected and there is an estimated 42,000 people under the age of 65 living with dementia in the UK.

Defining delirium

Delirium is a serious medical condition whereby a person experiences an acute decline in mental functioning with confusion. Unlike dementia which develops gradually, delirium develops over a short period of time and symptoms tend to fluctuate.

Signs and symptoms include:

  • Distractibility - difficulty concentrating or poor attention
  • Disorientation – difficulty knowing who or where one is or the time of day
  • Disturbed cognition and memory impairment
  • Incoherent speech
  • Disruption to the normal sleep/wake cycle and eating patterns

Delirium can be hyperactive, characterised by restlessness, agitation, hallucinations, delusions and inappropriate behaviour. Conversely hypoactive is characterised by lethargy, drowsiness and withdrawn behaviour. Mixed delirium is a combination of the two.

Delirium is usually caused by a medical condition such as infection, constipation dehydration, pain, surgery or severe illness. Whereas dementia is a chronic and progressive irreversible condition, delirium usually resolves in days to weeks, if recognised and any underlying cause is identified and treated.

Older people are at increased risk of developing delirium; the risk is greatest in those who have a pre-existing dementia. Delirium can have long term impact on a person’s physical and mental function, and is associated with increased risk of falls, increased length of stay and, in some cases, premature death. For people living with dementia, experiencing and episode of delirium can lead to an increased rate of cognitive decline.

Why does this matter?

People with dementia will be referred to us for the same reasons as other people however; their experience may differ due to the challenges of the disease. The anxiety of attending hospital for surgery or a diagnostic intervention can be very frightening, particularly if you have a memory impairment and communication difficulties. Any change from the person’s normal routine can have a significant impact on their experience and potentially their clinical outcome

Lack of awareness and understanding of the challenges faced by a person living with dementia/delirium can result in stigmatisation and barriers to accessing support leading to worse health outcomes and poorer quality of life compared to those who are not. Despite increased prevalence of dementia there is still work to be done around identification and recognition. Routinely screening for new cognitive impairment and linking people and those who support them in with appropriate services enables them to access the help they need and make informed decisions about their future.

We recognise that across the Trust there are already examples of excellence in dementia care and through the implementation of this strategy across our entire organisation the aim is to reduce variability and continually develop and improve our services

This means that dementia really is everybody’s business and meeting the challenge of delivering excellent dementia/delirium care requires a commitment and co-ordinated approach from the entire workforce.

Setting the national and local context

National context

Dementia is a global phenomenon and is recognised as one of the most important health and social care challenges of our generation. There are approximately 850,000 people in England living with dementia. This is expected to reach one million by 2025 and two million by 2051.

Dementia is predominantly a disorder of later life, for every 5 year age group the proportion of people with it doubles; one third of people over 95 years of age have dementia. There are however at least 17,000 people under the age of 65 who have the condition. Dementia affects both men and women and all ethnic groups and social classes. Around two thirds of people with dementia are women; 25,000 people with dementia in the UK are from Black and Minority Ethnic groups. There are 540,000 carers of people living with dementia in England, half of which are in employment. The Department of Health estimates that 25 per cent of hospital beds are occupied by someone living with dementia.

Local context

Harrow has one of the highest proportions of older residents aged 65 and over compared to other London boroughs at 15.2%. In July 2018, 1,589 people aged 65 and over had been diagnosed with dementia and It is estimated that there are currently 2,524 people, living with dementia in Harrow.

The number of Ealing residents living with dementia is currently estimated to be 2,630. This equates to 6.8% of the total population aged 65 and over. Due to the ageing population of Ealing, this number is projected to rise significantly in the next 25 years to 5,321 by 2038 (8.4% of the total population over the age of 65).

There are currently around 8,970 people within Brent, Ealing and Harrow boroughs with dementia and this is expected to rise to over 12,550 by 2030.

Associated strategies and reports

National dementia strategy

Improving care for those living with dementia care has been and continues to be a priority for the government, NHS, and public. Consequently, NHS providers and regulators, government agencies, charitable organisations, and other health bodies have produced a vast array of strategies and guidelines.

Living well with dementia: A National Dementia Strategy (Department of Health, 2009)

This landmark publication identified improving dementia care and services as a key national priority. Dementia is not a natural consequence of ageing and there is a great deal that can be done to better support those diagnosed with the condition, prevent crises occurring and improve wellbeing and quality of life.

The strategic direction was defined through three broad themes:

Raising awareness and understanding

Much stigma and many misconceptions surround dementia, limiting help being sought and offered. Increasing public and professional awareness and understanding of dementia will lead to individuals receiving timely diagnosis and care, promote the prevention of dementia, and reduce social exclusion and discrimination.

Early diagnosis and support

Only 66% of people with dementia in England, Wales and Northern Ireland receive a formal diagnosis (Alzheimer’s Society, 2013). www.alzheimers.org.uk/dementiamap

Early diagnosis and intervention can delay progression of symptoms, help the person remain in their own home and generally improve quality of life for themselves and their carer.

Living well with dementia

The care and support received by those with dementia, and their carers, needs to be sensitive to their needs and maximise independence, dignity and empathy. Dementia 2012: A National Challenge’ (Alzheimer’s Society) cites a number of deficits relating to care of patients with dementia in general hospitals, which should be addressed to improve outcome:

  • Lack of clinical leadership
  • Lack of knowledge and skills of staff who care for people with dementia
  • Insufficient information sought from relatives and carers
  • Families excluded from discharge planning
  • Poor nutritional care and support
  • Lack of co-ordination between hospitals and care providers at the point of discharge

The supporting objectives for these themes can be viewed in Living well with dementia: a national dementia strategy.

Five year forward view (2014)

The key strategic priorities for dementia care in the Five Year Forward View:

  • Increase those able to get a formal diagnosis from one half to two thirds
  • Develop Consistent standard of post diagnosis support including care plans
  • Create dementia friendly communities

This publication highlights the need for advisors and not only clinicians to build meaningful relationships with service users, families, and carers and that ‘statutory services, communities, and businesses’ need to work together to provide environments that are more supportive to people living with dementia.

This publication introduced the phrase "living well with dementia" and requires providers to offer a “consistent standard of support for patients newly diagnosed with dementia, supported by named clinicians or advisors, with proper care plans developed in partnership with patients and families”.

Read the Five Year Forward View (Department of Health: 2014).

The Prime Minister’s Challenge on Dementia 2020 (2015)

This publication admits that the objectives in the national dementia strategy were not met and sets new aims that may be divided into four main themes:

  • Increase public awareness, staff training and research
  • More dementia friendly hospital, communities and businesses
  • Equal access to diagnosis and coordinated community care
  • Meaningful post diagnosis support

This report builds upon the work of the National Dementia Action Alliance (NDAA) who asked people with dementia about what their priorities and desires were regarding the care they received.

They wanted to:

  • Have control over the decisions that affect them
  • Use services designed around their needs and the needs of their carers
  • Have support to live their life
  • Have knowledge to get what they need
  • Live in a supportive environment
  • Have a sense of belonging and community
  • Expect a good death
  • Know how to support research

NHS long-term plan (2019)

Whilst dementia is not a core element of this publication, it is referenced in a number of places. Supporting people living with dementia is a focus of the plan through the expansion of multidisciplinary community teams, development of primary care networks by 2021, use of assistive technology, and collaboration with the voluntary sector. The plan continues to focus on the dementia diagnosis rate and commits to providing more personalised care in the community through support for carers and better care planning, for example. The plan makes it clear that dementia will be one of the most prevalent diseases affecting our population in the future and that it must remain a strategic priority.

The right care: Dementia Friendly Hospital charter - a call to action on improving the care of people with dementia in acute hospitals.

In 2012 Chief Executives were invited to answer the call to action and pledge their organisation’s commitment to becoming dementia-friendly. Acute trusts were advised to focus on:

  1. The environment in which care is given
  2. The knowledge, skills and attitude of the workforce
  3. The ability to identify and assess cognitive impairment
  4. The ability to support people with dementia to be discharged back home
  5. The use of a person centred care plan which involves family and carers

The second phase of the initiative is underway with Trusts now asked to support the Dementia Friendly Hospital Charter. This identifies eight key standards of care that a person living with dementia or their carer can expect to be met when accessing services from a hospital within the realms of:

  • Staffing
  • Partnership
  • Assessments
  • Environment
  • Governance

Read the NHS long-term plan.

National audit of dementia

The National Audit of Dementia (general hospitals) was established in 2008 and has been undertaken regularly ever since. The audit examines structures, policies, key staff and care processes that impact on service planning and provision for the care of people with dementia within a general hospital, and a case note audit of between 50-100 sets of notes for compliance with a checklist of standards that relate to their admission, assessment, care planning/delivery and discharge.

The audits provide the opportunity to examine the quality of care received by people with dementia in general hospitals and allow Trusts to track their progress with meeting the standards, as well as benchmarking performance against other Trusts.

This Trust is committed to participating in the national dementia audit and other related campaigns to improve care for patients with dementia and support their carers and families. Patient Led Assessment of the Care Environment (PLACE)

Annual PLACE assessments were introduced in 2013. PLACE assesses the patient environment, privacy and dignity, food, cleanliness and general building maintenance. Compliance with dementia-friendly design elements, such as signage, colour-coding toilet doors and non-slip, pattern free flooring has been included since the 2016 audit.

Trust vision for dementia

LNWH will be a dementia-friendly organisation where every patient with dementia, together with their families and carers, receive high quality, compassionate, person centred care.

Our aim:

To improve care and experience for those with dementia, and their carers, across four key domains:

  • Diagnosing well
  • Living well
  • Supporting well
  • Dying well

This will be supported by an underpinning training framework in line with Health Education England recommendations. Objectives

For each of the domains there is a series of key objectives. These have been drawn from national and local drivers and in response to feedback we have received from patients and carers. Diagnosing well:

  • Ensure patients at risk are screened for potential dementia and, where indicated, offered comprehensive assessment and diagnostic investigations
  • Where appropriate, access expert opinion and support from the Psychiatric Liaison service
  • Robustly apply processes to ensure early identification of delirium and its underlying cause
  • Facilitate ongoing assessment and support from specialist services through direct referral and/or via discharge summary information to the patient’s GP. Supporting well:

  • Deliver person-centred care that recognises the unique experiences and needs of every individual

  • Embed the use of life story profiles such as “This Is Me” and “Important Things about me” across all relevant clinical areas

  • Provide therapeutic activity, relaxation and reminiscence resources

  • Expand the “Carers Welcome/johns campaign” approach at all times and across all areas

  • Provide finger foods and snacks for those not able to eat full meals, available throughout the day and night

  • Involve patients and carers in care planning, supporting patients to make decisions where able, seeking views of those close to them when unable to do so for themselves

  • Provide information resources and signposting to organisations for ongoing support for patients and carers

  • Actively seek feedback from patients and carers

  • Incorporate dementia-friendly design principles in site improvement projects

Living well:

  • Ensure that patients with dementia receive effective pain management and appropriate therapy input including Speech and Language Therapy and Dietetics
  • Minimise the use of antipsychotic medication and where this is prescribed ensure referral to the Psychiatric Liaison team
  • Protect the best interests of the patient, ensuring that where a patient’s liberty is restricted, this is proportionate, appropriate and that Deprivation of Liberty Safeguards are applied in accordance with legislation
  • Deliver care in line with evidence base where assessment of symptoms indicates presence of delirium
  • Work collaboratively with patients, carers and the wider multidisciplinary team to develop integrated discharge plans
  • Record results of cognitive tests, administered on admission and prior to discharge, on the discharge summary to facilitate ongoing care and treatment

Dying well:

  • Work collaboratively with the Palliative Care Team to provide high quality care in line with the Trust’s End of Life Strategy
  • Support patients to receive care in their preferred place of care that can provide care and support appropriate to their personal needs
  • For patients spending their last days of life at the Trust, ensure individualised care is planned and delivered
  • Ask patients and carers about their spiritual and pastoral needs and wishes, accessing the support of chaplaincy staff and volunteers if requested

Training strategy

  • Develop a dementia - aware workforce that delivers compassionate, appropriate and effective care to all patients and their carers.
  • Implement a structured training programme delivered via a tiered approach based on the Dementia Core Skills Education and Training Framework (Skills for Health, Health Education England and Skills for Care, 2015)
  • Ensure all staff, irrespective of role, undertake dementia awareness training as a minimum
  • Ensure that staff caring for patients with dementia are appropriately trained for their role
  • Deliver training in delirium, its causes and treatments and its relationship to dementia, pain and behavioural symptoms
  • Develop Dementia Champions across all wards and clinical areas
  • Develop further training and resources in relation to the Mental Capacity Act, Consent and Deprivations of liberty Safeguards
  • Set training targets in line with local need and any Commissioner requirements
  • Evaluate training and learning, referencing quantitative and qualitative outcome data

Tier 1

  • Raising dementia awareness, in terms of knowledge, skills and attitudes for all those working in health and social care settings
  • Relevant to the entire health and care workforce .

Tier 2

  • Knowledge, skills and attitudes for roles that have regular contact with people living with dementia
  • Relevant to all health and care staff in settings where they are likely to have regular contact with people affected by dementia.

Tier 3

  • Enhancing the knowledge, skills and attitudes for experts working with people living with dementia
  • Relevant to staff working intensively with people affected by dementia including those who take a lead in decision making and developing or disseminating good practice.

Implementing the strategy

The strategy will be delivered via an outcomes-based annual work plan. Delivery of the plan will be overseen by the Matron for Dementia with individual streams of work being progressed by specified groups, departments or individuals. Collaboration with stakeholders including service users, colleagues in mental health and Social Services and local voluntary agencies will be to ensure the implementation plan remains relevant and appropriately prioritised in response to emerging issues throughout the lifetime of the strategy. Monitoring and evaluation

Progress against milestones to deliver the objectives will be reviewed on a quarterly basis by the Dementia Strategy Steering Group; the work plan will be evaluated at year end and priority actions agreed for the subsequent year.

Accountability: reporting structure

  • Quarterly dementia update report via strategy group to clinical risk and quality committee
  • Update bi-monthly to patient experience committee.
  • The Dementia Strategy Working Group will review the strategy on an annual basis. Conclusion

The dementia strategy of London North West University Healthcare NHS Trust aims to provide a continuous and reflective framework to develop supportive and compassionate services for patients living with dementia and for their carers’. The framework is aligned to priorities identified at national, regional and local level, and is consistent with the Trust’s vision to provide excellent clinical care in the right setting by being compassionate, responsive and innovative.

The strategy champions the best interests of patients and carers, provides for clinically-led service development and excellence, partnership with key stakeholders including community providers and the voluntary sector and supports compliance with the Equality Act.

Equality impact assessment

The Trust is legally required to ensure that all new policies and documents are assessed for their impact, both positive and negative, on equality target groups:

  • Race/nationality
  • Ethnic origins
  • Religion/beliefs
  • Disability
  • Age
  • Gender
  • Sexual orientation and transgender

This strategy provides an effective framework for meeting the needs of different equality groups.

Does the policy/guidance affect one group less or more favourably than another on the basis of:

  • Race: no
  • Ethnic origins (including gypsies and travellers): no
  • Nationality: no
  • Gender: no
  • Culture: no
  • Religion or belief: no
  • Sexual orientation including lesbian, gay and bisexual people: no
  • Age: no
  • Disability – learning disabilities, physical disability, sensory impairment and mental health problems: This strategy has a positive impact for those with dementia. There is no negative impact on those who do not have a mental health condition.
  • Is there any evidence that some groups are affected differently?: No

References/Bibliography

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