Dementia - health and social services staff: framework - Promoting Excellence 2021

Expertise in Dementia Practice Level

The Expertise in Dementia Practice Level outlines the knowledge and skills required for health and social care staff who, through their role and practice setting, play an expert specialist role in the care, treatment and support of people with dementia. The knowledge and skills outlined at this level become increasingly role and context specific.

Stage - Keeping well, prevention and finding out it's dementia

What staff know (knowledge)

• Have in-depth knowledge of positive approaches to enable and support people to be empowered to exercise rights and choices.
• Have comprehensive understanding of the impact that discrimination and stigma may have on the life of people with dementia, their families and carers.
• Have advanced understanding of the value of person-centred approaches in therapeutic relationships and communication.
• Have knowledge and critical understanding of a range of person-centred assessment approaches to diagnosing dementia.
• Have comprehensive understanding of the impact and potential losses associated with a diagnosis of dementia and the range of possible reactions, including emotional distress.
• Have comprehensive understanding of the impact that a diagnosis of dementia can have on a person's identity and emotional wellbeing.
• Appreciate how promoting hope can contribute to people's positive adjustment to a dementia diagnosis.
• Have comprehensive understanding of the impact of a diagnosis of dementia on people's families, wider social networks and relationships.
• Have comprehensive understanding of the supportive actions that can enable people with dementia and their families and carers to engage in education or knowledge-sharing.
• Appreciate how a person's background and culture can influence how they present with dementia.
• Understand how people from diverse backgrounds and cultures may understand and respond to a diagnosis of dementia.
• Have comprehensive knowledge and understanding of the particular impact of a diagnosis of dementia for younger people.
• Have comprehensive understanding of the equality and diversity issues that should be considered in relation to receiving a diagnosis of dementia and in post-diagnostic support.
• Have comprehensive understanding of how access to appropriate services and support can be enabled in a way that respects diversity and challenges inequalities.
• Have comprehensive knowledge of how to assess the wide range of requirements of people with dementia, including younger people and those with learning disabilities.
• Have critical knowledge of the increased risk of developing dementia for people with learning disabilities.
• Have critical understanding of the complex interaction between learning disabilities and dementia.
• Have knowledge of the range of changes in behaviour and communication that can indicate dementia in a person with learning disabilities.
• Have expert knowledge of the strengths and limitations of specific neuropsychological assessment and diagnostic tools and techniques, when appropriate to role.
• Have expert knowledge of the range of pharmacological interventions that can enhance memory.
• Have expert knowledge of the differences between dementia and other physical and mental health problems, particularly delirium and depression.
• Have expert knowledge of the short- and long-term benefits for people living with dementia of remaining active and, where possible, increasing their physical activity and following a healthy diet.

What staff are able to do (skills)

• Promote awareness of people's right to exercise choice, social inclusion and citizenship.
• Challenge any discrimination and stigma people with dementia may face within health and social care services and their wider communities.
• Support people to exercise their rights if they experience discrimination and stigma.
• Sensitively undertake pre-diagnostic counselling with the person to ascertain whether they wish to proceed with investigations that may result in a diagnosis.
• Support the person to include others they wish to be part of the diagnostic process.
• When appropriate to role, assess a person's capacity to consent to cognitive screening or neuropsychological testing.
• Use a range of person-centred assessment approaches and tools to assist in making a diagnosis of dementia, when appropriate to role.
• Using advanced communication skills, sensitively and empathetically communicate a diagnosis of dementia to the person and their family that responds to their unique needs and situation.
• Recognise the verbal and nonverbal cues from people with dementia, their families and carers that may indicate psychological distress.
• Provide psychological and psychosocial support for people and their families when receiving a diagnosis of dementia.
• Identify and respond when a person becomes distressed following a diagnosis of dementia and requires a specific psychological intervention.
• Promote, influence and lead the development of accessible sources for education and knowledge-sharing for people with dementia and their families and carers.
• Demonstrate empathy and respect when supporting the person, their family and carers through the diagnosis process in a way that values diversity.
• Challenge, and take steps to address, any inequalities in access to early diagnosis and post-diagnostic support that may be experienced in relation to diversity, including for people with learning disabilities or younger people with dementia.
• Adapt assessment approaches to reflect the diversity of people who may receive a diagnosis of dementia.
• Adopt a person-centred approach to regular assessment and review of people with learning disabilities to ensure accurate and timely diagnosis when dementia is present.
• When appropriate to role, undertake specific neuropsychological assessments.
• When appropriate to role, sensitively engage with people and their families in monitoring and reviewing the impact of pharmacological interventions.
• Using advanced communication skills and when appropriate to role, discuss with people the benefits and implications of pharmacological interventions that can enhance memory.
• Provide appropriate assessment and interventions to address other physical and/or mental health problems where identified.
• Work in partnership with specialist colleagues to provide physical and mental health support to people and families when required
• When appropriate to role, provide expert advice on the short- and long-term benefits for people with dementia of remaining active and, where possible, increasing their physical activity and following a healthy diet.

Stage - Living well with dementia

What staff know (knowledge)

• Have comprehensive knowledge of the concepts of person-centred care and personalisation, and the implications for practice, service design and delivery.
• Have in-depth understanding of the need for citizen leadership, user and carer expertise and participation in creating systems and services that meet the individual needs of people with dementia.
• Understand the principles and roles of co-production, participation, empowerment, enablement and community capacity-building in promoting independence.
• Have comprehensive knowledge and understanding of the principles, processes, implications and procedures involved in accessing and utilising self-directed support.
• Have detailed knowledge of outcomes-focused approaches, including a joint outcomes approach for people with dementia, their families and carers.
• Have knowledge of a range of methodologies for delivering, measuring and monitoring outcomes to ensure that the needs and wishes of people with dementia, their families and carers are met.
• Have in-depth knowledge of up-todate evidence-based approaches to person-centred and relationship-focused assessment, treatment and support for people with dementia.
• Have comprehensive understanding of the relationship between dementia, depression and delirium.
• Have expert knowledge of the complexity of co-morbidity in dementia.
• Have a thorough understanding of evidence-based approaches that can enhance psychological, social and physical wellbeing.
• Have expert knowledge of the range of options and interventions that support people with dementia who are experiencing anxiety and depression.
• Have comprehensive understanding of how stress can impact on people with dementia, their families and carers.
• Have detailed knowledge of how to support people with dementia, their families and carers to prevent stress and manage and minimise it when it occurs.
• Have detailed knowledge of the pharmacological treatment of dementia and the potential impact on people with dementia.
• Have expert knowledge of evidence-based psychological interventions and therapies for people with dementia, their families and carers.
• Appreciate the possible causes of personal or family distress linked to the emotional impact of the symptoms of dementia.
• Have expert knowledge of how evidence-based assistive and innovative technology and technology-enabled care can enhance the quality of life of people with dementia.
• Have expert knowledge of the legal, moral and ethical issues, challenges and dilemmas of technology-enabled care in supporting people to live well with dementia.
• Have expert understanding of the specific interpersonal and relationship issues that may impact on people with dementia, their families and carers.
• Have expert knowledge of the self-help strategies that enable people with dementia to deal with memory changes and enhance their memory.
• Have expert knowledge of the range of approaches and adaptations, including technological solutions, that can enhance people's home environment to promote physical safety, emotional security and privacy.
• Have comprehensive understanding of the concept of a dementia-friendly environment.
• Have comprehensive understanding of the environmental, physical and cognitive issues for people with dementia that can increase the risk of slips, trips and falls.
• Have expert knowledge of the range of measures that can contribute to the safety of people with dementia, including prevention of falls, without compromising their right to dignity or independence.
• Have expert knowledge of different perceptions of risk and the range of approaches to risk enablement.
• Appreciate the reasons and rationale behind the aversion some people may have to risk and risk-taking.
• Have expert understanding of advance planning, taking into consideration any substitute decision-making arrangements that are in place.
• Have expert understanding of the sensitivities associated with advance planning conversations and processes for people with dementia, their familiesand carers.
• Have expert knowledge of evidence-based approaches and techniques for assessing neglect and abuse.
• Have critical knowledge of legislation, national and local guidelines, and protocols to respond to neglect and abuse.

What staff are able to do (skills)

• Support and enable people with dementia, their families and carers to find the right solutions for them and actively design and select the services they require.
• Promote, influence and lead innovative and creative practices and services that meet the individual needs of people with dementia.
• Provide expert advice on strategies to adapt lifestyles that support continued engagement in communities, employment, relationships and social networks.
• Promote a culture that supports all staff to adopt attitudes and practices that value the importance of existing natural community resources in supporting people with dementia.
• Demonstrate leadership in shaping service design and delivery that reflects co-production, participation, empowerment, enablement and community capacity-building.
• When appropriate to role, support people with dementia, their families and carers to understand and make informed choices about self-directed support.
• Support people with dementia, their families and carers to access self-directed support if desired.
• When assessing the support needs of people with dementia, promote outcomes-focused approaches that build on their existing strengths and capabilities.
• Support people with dementia, their families and carers to achieve their expressed outcomes.
• Promote and use person-centred and relationship-focused approaches to assessment, treatment and support for people with dementia.
• When appropriate to role, lead and/or contribute to the development of up-to-date evidence-based practice in providing the most appropriate treatment for depression and delirium in people with dementia.
• Support others in the delivery of up-to-date evidence-based practice in providing the most appropriate treatment for co-morbidity in dementia.
• Provide social, emotional and psychological support and interventions to assist people with dementia, their families and carers to manage difficulties such as anxiety or depression.
• Draw on a range of different social, psychological and psychosocial approaches to provide support appropriate to people with dementia, their families and carers.
• When appropriate to role, provide expert advice on pharmacological interventions that support emotional wellbeing.
• Provide expert support and provide a range of non-pharmacological interventions to assist people with dementia to maintain existing cognitive skills and devise strategies to cope with reducing cognitive ability.
• Using expert communication skills, provide expert support in the provision of counselling or psychological therapies that can support and enhance intimate relationships or build coping skills.
• Ensure that staff and services use evidence-based practice in the use of assistive and innovative technology and technology-enabled care.
• Ensure that provision of technology-enabled care takes account of legal, moral and ethical considerations, including capacity and consent.
• Work with the person, their family and carers in responding to complex interpersonal and relationship issues associated with dementia.
• Provide expert advice to other practitioners on responding to complex interpersonal issues associated with dementia.
• Work with people with dementiato support them to enhance their coping skills and strategies to compensate for their memory difficulties and/or reductions in other cognitive areas.
• Provide dementia-specific expert advice, education and guidance on enhancing the physical and social environment to ensure physical safety and emotional security.
• Assess, audit, review and, where necessary, ensure that adaptations are made to the physical and social environment to support people with dementia where they live or work.
• Make recommendations regarding the various ways in which the environment and environmental adaptations can contribute to people's physical safety, emotional security and privacy.
• Make recommendations regarding environmental design to assist people with dementia to be orientated and independent.
• Act as a source of expert advice on the benefits of risk enablement in supporting people with dementia to have choice and control.
• Apply flexible and responsive approaches to supporting people, including staff, families and carers, to recognise that risk-enabling approaches can result in positive benefits for people with dementia.
• Support people with dementia, their families and carers to engage in advance planning, including palliative and end of life care.
• Provide support and advice to services and professionals involved in supporting people with dementia, their families and carers to engage in advance planning.
• Provide support and advice to services, professionals and people with dementia in relation to assessing risk, including areas of potential neglect and abuse.
• Take appropriate action that reflects legislation, national and local guidelines, and protocols to safeguard people, to prevent neglect and abuse, and respond to people who are concerned about or experiencing neglect and abuse

Stage - Living well with increasing help and support

What staff know (knowledge)

• Have comprehensive knowledge, understanding and synthesis of rights-based legal, ethical and professional guidance to inform practice in relation to supporting people with dementia, their families and carers.
• Have comprehensive understanding of the principles of assessment of capacity for people with dementia and the underpinning evidence and legislation.
• Have expert knowledge in the application and understanding of the legislation, guidance and policy, including ethical decision-making in relation to people with dementia.
• Have expert knowledge and in-depth understanding of the impact of dementia on communication.
• Have expert knowledge of advanced communication approaches to support people with dementia whose communication is compromised, including augmentative and alternative methods.
• Appreciate that people with dementia have the right to communication equipment and the support they need to use it where communication is compromised.
• Have expert knowledge on how to individually tailor evidence-based psychological or pharmacological interventions to provide best outcomes for people with dementia.
• Have comprehensive understanding of the specific ways in which physical health problems can impact on people with dementia and influence the progression of dementia.
• Have expert knowledge of the complexities of living with co-morbid conditions for people with dementia.
• Have expertise in the concept and consequences of frailty and how these can impact on people with dementia.
• Have expert knowledge of how people with dementia who also have frailty are at risk of adverse outcomes that include dramatic changes in their physical and mental wellbeing after an apparently minor event that challenges their health, such as an infection or the introduction of new medication.
• Have critical understanding that strengths-based approaches support people with dementia to maintain their physical and mental health and wellbeing.
• Have knowledge and understanding of the theory behind evidence-based cognitive stimulation therapy (CST) and cognitive rehabilitation approaches and best practice for use.
• Have expert knowledge of the benefits of multi-sensory stimulation, recreational activities and use of combined therapies.
• Have in-depth knowledge of the potential sources of stress and distress and evidence-based approaches to prevent and manage this.
• Have knowledge of approaches that promote holistic collaborative assessment and interventions to support people with dementia who are stressed or distressed.
• Have critical knowledge of best-practice guidance and evidence relating to working with people affected by trauma and how this can cause distress for people with dementia.
• Have in-depth knowledge and understanding of potential trauma triggers in the dementia service context and how this can lead to re-traumatisation.
• Have comprehensive knowledge of a range of person-centred approaches to support people with dementia whose ability to communicate their needs is compromised.
• Appreciate the importance of partnership-working in the provision of support, care and services for people with dementia, their families and carers.
• Have expert knowledge of the opportunities and challenges in implementing an outcomes-focused approach to supporting people with dementia, their families and carers.
• Appreciate the concepts of person-centred care and personalisation, and the implications for how services and individual support is delivered.
• Have knowledge and critical understanding of self-directed support and how this can be enabled and maximised to support people with dementia.
• Have expert knowledge of the range of the evidence-based assistive and innovative technologies available that can support independent living.
• Have expert knowledge of the legal, moral and ethical issues, challenges and dilemmas of technology-enabled care in supporting people to live well with dementia.

What staff are able to do (skills)

• Act as a source of expert advice when informed consent may be compromised.
• Sensitively carry out assessments to inform consent and capacity where this may be compromised in relation to people's rights and choices.
• Actively promote ethical decision-making in relation to people with dementia.
• Support staff to understand and apply legislation, guidance and policy, including ethical decision-making.
• Using advanced communication skills, support people with dementia whose communication is compromised.
• Ensure that services and staff are able to support people with dementia whose communication is compromised through provision of communication equipment and the support they need to use it.
• Share expertise to support staff to develop advanced communication skills.
• When appropriate to role, individually tailor evidence-based psychological or pharmacological interventions to provide best outcomes for people with dementia.
• When appropriate to role, modify and adapt social, psychological and psychosocial interventions.
• Monitor and evaluate the effectiveness of social, psychological and psychosocial interventions for people with dementia.
• Adopt/promote/provide expert advice on strengths-based approaches to holistically assess people's physical and mentalhealth needs and monitor for changes and deteriorations in their health.
• Lead multi-disciplinary approaches to promoting and maintaining people's current abilities and strengths related to physical and mental health and wellbeing.
• Engage people with dementia in a range of meaningful activities to maximise and improve their memory, such as cognitive rehabilitation.
• Act as a source of expert advice and guidance on sensory stimulation, recreational activities and use of combined therapies.
• Expertly assess and formulate person-centred interventions as part of a multi-disciplinary team to support people with dementia who are stressed or distressed.
• Lead and promote holistic, collaborative assessment and interventions to support people with dementia who are stressed or distressed, ensuring involvement of people with dementia, their families and carers.
• Develop and support trauma-informed systems and procedures within services to address the immediate safety needs of people with dementia affected by trauma and recognise and reduce risk of re-traumatisation.
• Actively promote person-centred responses to people with dementia whose ability to communicate their needs is compromised.
• Actively liaise with partners in care to promote best practice in dementia care.
• Act as a source of expert advice on designing, developing and delivering outcomes-focused approaches, practices and services for people with dementia, their families and carers.
• Evaluate the impact of services and support provided to people, their families and carers in a way that actively involves them and informs continuous improvements.
• Contribute to practices that enable people with dementia to actively find the right solutions for them and access any services they choose, including the use of self-directed support.
• Ensure that service provision utilises a range of evidence-based assistive and innovative technologies to support people with dementia to maximise independent living.
• Act as a source of expert advice on assessment and identification of technological solutions that will enhance quality of life and independence for people with dementia.
• Ensure that services and staff take legal, moral and ethical considerations, including capacity and consent, into account when technological solutions are put in place.

Stage - End of life and dying well

What staff know (knowledge)

• Have critical understanding of the importance of comprehensive and effective communication within and across teams in the delivery of person-centred palliative and end of life care for people with dementia.
• Have expert knowledge of the evidence base, frameworks, standards and tools that underpin delivery of person-centred palliative and end of life care for people with dementia.
• Have expert knowledge of the interdependence and complexity of physical, psychological, emotional and spiritual care needs of a person with dementia, their family and carers in relation to palliative and end of life care.
• Have expert knowledge of the importance of values and beliefs in the delivery of person-centred palliative and end of life care for people with dementia.
• Have expert understanding of the role of family, carers and friends in the provision of palliative and end of life care for people with dementia.
• Have expert knowledge on how to communicate sensitive information relating to death and dying to families and carers.
• Appreciate the importance of involving families and carers and keeping them well informed about options.
• Have expert knowledge and understanding of the complexity of interactions and potential conflicts that arise which may compromise the wishes of the person with dementia.
• Have expert knowledge of assessment, prevention and management of chronic and acute pain.
• Have expert knowledge of pharmacological and non-pharmacological interventions/therapies to prevent and alleviate stress and distress.
• Understand that possible additional distress may manifest in behavioural symptoms that require sensitive responses.
• Have expert knowledge in identifying and responding to the progression from palliative care, to end of life care, to the last days of life.
• Have expert knowledge of legal, ethical and human rights relevant to people with dementia at the end of life.
• Have in-depth knowledge of current best practice guidance, legislation and policy regarding palliative care and end of life care.
• Have expert knowledge and understanding of the legal and policy position regarding resuscitation in relation to people with dementia.
• Have expert knowledge and understanding of the support needs of family, carers and friends, including after the death of the person with dementia.

What staff are able to do (skills)

• Lead the co-ordination of palliative and end of life care utilising advanced communication skills within and across teams.
• Provide expert advice and support to others to use a range of holistic assessment tools and techniques to assess the physical, psychological, emotional and spiritual needs of the person with dementia, their family and carers in relation to palliative and end of life care.
• Provide specialist support and guidance for colleagues to address specific physical, psychological, emotional and spiritual care needs of the person with dementia.
• When appropriate to role, lead the co-ordination of palliative and end of life care.
• Ensure that services and staff encourage, enable and involve families and carers, so far as desired and appropriate, in assisting in the provision of care for the person with dementia.
• Promote a service culture that supports staff to engage in meaningful and timely conversations, communicating and listening in a sensitive manner when discussing complex end of life concerns with people with dementia, their families and carers.
• Support families and carers to be informed about options and involved in decisions.
• Act as a source of expertise in conflict resolution relating to decision-making and compliance with the wishes of the person with dementia.
• Promote a service culture that supports staff to advocate on behalf of families and carers in relation to implementing the wishes of the person with dementia.
• Act as an expert and source of advice on the assessment, prevention and management of chronic and acute pain.
• Ensure that staff implement appropriate management of pain in line with any preferences the person with dementia may have articulated.
• Ensure that unexplained changes in behaviour or signs of distress are fully explored and assessed.
• Act as an expert source of information on both pharmacological and non-pharmacological interventions/therapies.
• Provide expert advice and support to others to enable them to understand and respond to the changing needs of the person with dementia as they progress through palliative care, to end of life care and to the last days of life.
• Provide expert advice on meeting the specific needs of people with dementia to promote comfort and dying well.
• Act as a source of expert advice on legal, ethical and human rights issues relevant to people with dementia at the end of life.
• Ensure that services reflect current best practice guidance, legislation and policy regarding palliative care and end of life care.
• Promote a service culture that supports staff to provide appropriate support for family, carers and friends, including following the death of the person with dementia.
• Promote a service culture that supports staff to access support, if required, related to issues associated with palliative care in dementia.
• Be an agent of change within services to improve the palliative care service for people with dementia, their families and carers.