Publication - Advice and guidance

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

Published: 17 May 2021
Directorate:
Mental Health and Social Care Directorate
Part of:
Health and social care
ISBN:
9781800049635

Promoting Excellence 2021 is a framework for all health and social services staff working with people with dementia, their families and carers.

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

Dementia Enhanced Practice Level

The Enhanced Dementia Practice Level outlines the knowledge and skills required by health and social care staff who have more regular and intense contact with people with dementia, provide specific interventions, and/or direct and co-ordinate care and services for 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)

  • Critically evaluate and apply the evidence base that may help prevent some forms of dementia.
  • Appreciate the complex issues that need to be addressed and explored by people, their families and carers facing a potential diagnosis of dementia.
  • Have detailed knowledge of the different types of dementia and the implications for the support needs of the person on receiving a diagnosis.
  • Have detailed knowledge about how to prevent and minimise deterioration in people's health following a diagnosis of dementia.
  • Have detailed knowledge of the differences between dementia and other physical and mental health problems, particularly delirium, anxiety and depression.
  • Have knowledge of a range of evidence-based screening tools that may be used to assess cognition (memory, orientation, language, praxis, perceptual skills and executive function) in people with dementia.
  • Have detailed knowledge of local services and specialists, their roles and functions, and the services they offer for assessment and advice on memory problems.
  • Appreciate the impact and potential losses associated with a diagnosis of dementia and the range of possible reactions, including emotional distress.
  • Appreciate the potential impact of a diagnosis of dementia on relationships, roles and expectations.
  • Appreciate that a person may need time to adjust to a diagnosis of dementia.
  • Appreciate the importance of promoting hope for a person receiving a diagnosis of dementia, their family and carers.
  • Appreciate the potential impact of a diagnosis of dementia on a diverse range of people, including those from a range of ethnic and cultural groups, people with learning disabilities and younger people.
  • Recognise the risk of people with learning disabilities developing dementia.
  • Have detailed knowledge of outcomes-focused approaches in dementia care, treatment and support.
  • Appreciate the importance of identifying and focusing on outcomes that are important to the person with dementia.
  • Have detailed knowledge of evidence-based, solution-focused psychological interventions to assess the impact of diagnosis on the wellbeing of people with dementia, their families and carers.
  • Critically evaluate the evidence base relating to the short- and long-term benefits for people living with dementia to remain active and, where possible, increase their physical activity and follow a healthy diet.
  • Appreciate the importance of supporting people to maintain their independence and live well, including through the use of existing and emerging technologies.
  • Appreciate the supportive actions that can enable people with dementia and their families and carers to engage in education or knowledge-sharing.
  • Appreciate the potential risk of social isolation that can follow a diagnosis of dementia.
  • Understand the importance for people with dementia, their families and carers of continuing to maintain their chosen activities, social life and community involvement.
  • Appreciate the importance of peer and community support for people with dementia, their families and carers.
  • Appreciate the importance of people maintaining the spiritual and cultural aspects of life following a diagnosis of dementia.
  • Critically understand the human and legal rights of people with dementia to make decisions and take risks in the context of their own lives.
  • Have detailed knowledge of the principles and key provisions of relevant adult protection, and equalities legislation.
  • Have knowledge of how to work sensitively and empathetically alongside people with dementia to support them to identify and record their priorities for the future.
  • Recognise the complexities for people with dementia in planning for times when they have reducing capacity and when making decisions regarding end of life care.
  • Have detailed knowledge and understanding of health promotion and its impact on the progression of dementia.
  • Have knowledge of the signs of common mental and physical health problems for people with dementia, their families and carers.
  • Have knowledge of local services that provide specialist psychological interventions and therapies.
  • Have detailed knowledge and understanding of the underlying causes and signs of stress for the person with dementia, their family and carers.

What staff are able to do (skills)

  • Raise public awareness of the strategies that promote health and wellbeing and may help prevent some forms of dementia.
  • Support people to explore and consider the benefits and risks of receiving a diagnosis of dementia.
  • Discuss sensitively with the person with dementia their options in relation to referral to memory clinics and specialist services.
  • When required, support treatment and management of delirium, anxiety and/or depression.
  • Use screening tools to assess memory, orientation, language, praxis, perceptual skills and executive function.
  • Interpret feedback from evidence-based screening tools.
  • Refer to the most appropriate professional or service as required for specialist in-depth assessment and/or treatment.
  • Encourage the person to talk through concerns and fears and prioritise issues following a diagnosis of dementia.
  • Identify and respond sensitively to the verbal and non-verbal cues from the person with dementia, their family and carers, that may indicate psychological distress.
  • Ascertain the education needed by the person with dementia, their family and carers following a diagnosis and provide information or signpost as appropriate.
  • Adopt a person-centred approach, as part of the multi-disciplinary team, to supporting a person receiving a diagnosis that reflects the pace necessary to allow them to adjust.
  • Communicate sensitively and empathetically, promoting hope while focusing on positive elements of how people with dementia can live well.
  • If appropriate to role, contribute to regular assessment and review of people with learning disabilities to ensure accurate and timely diagnosis of dementia.
  • Ensure that all people with dementia, including younger people and people with learning disabilities, are supported to access chosen services in an equitable way.
  • Engage with the person with dementia to establish and assess the outcomes that are important to them and support them to prioritise and achieve them.
  • Maintain a positive and solution-focused approach that encourages and supports people with dementia, their families and carers to build on their strengths and abilities.
  • Provide advice and education for people with dementia about the short- and long-term benefits of remaining active and, where possible, increasing their physical activity and following a healthy diet.
  • Provide advice and education for people with dementia, their families and carers about the management of their own health, wellbeing and independence, including how technology can help maintain their quality of life.
  • Work to maximise opportunities for people with dementia and their families and carers to engage in education and knowledge-sharing.
  • Work to maximise social inclusion by supporting people with dementia, their families and carers to access community organisations and supports and continue to engage in meaningful activity.
  • Engage with people with dementia, their families and carers to find out how their spiritual and cultural beliefs can be supported and harnessed to adjust to their diagnosis and maintain their valued quality of life.
  • Actively support people with dementia, their families and carers to understand the legal frameworks that support choice and decision-making.
  • Apply the principles and key provisions of legislation to safeguard people with dementia.
  • Identify the complexities associated with dementia that may have legal and ethical implications, and act in a way that is of benefit to the person with dementia, their families and carers.
  • Using advanced communication skills, sensitively work with people with dementia to identify and record their priorities for the future and the elements of advanced planning they wish to undertake.
  • Ensure that planning for the future is at a pace that suits the person with dementia, their family and carers.
  • Actively support people with dementia to access physical and mental health assessments, treatments and services to maintain or improve their health and wellbeing.
  • Recognise and respond appropriately when a person with dementia, their family and carers are experiencing anxiety and/or depression and, if necessary, make referral to specialist services.
  • Use a range of preventative and proactive strategies to reduce the likelihood of the person with dementia becoming stressed or distressed.
  • Adopt a holistic approach to responding to a person with dementia who is stressed or distressed.

Stage - Living well with dementia

What staff know (knowledge)

  • Appreciate how existing and new natural community resources and opportunities can enable people with dementia, their families and carers to maintain a valued and socially included quality of life.
  • Have detailed knowledge about the concepts of person-centred care and personalisation, and the implications for how services and individual support is delivered.
  • Have a well-informed understanding of how self-directed support can be enabled and maximised to support people with dementia, their families and carers in creative and personalised ways.
  • Have detailed knowledge of personal outcomes-focused approaches and how they can enable the delivery of creative person-centred support for people with dementia.
  • Have detailed knowledge of the approaches and methods that should be used to measure the effectiveness and impact of support against people's personal outcomes.
  • Have detailed knowledge of the range of evidence-informed assistive and innovative technologies available that can support people in independent living.
  • Appreciate how environmental adaptations, assistive and innovative technology, and technology-enabled care can enhance the quality of life of a person with dementia, their family and carers.
  • Have detailed knowledge of approaches to working with people in assessing how the use of technologies will support people to live well.
  • Critically understand the legal, moral and ethical issues, including capacity and consent, surrounding opportunities, challenges and dilemmas associated with technology-enabled care in supporting people with dementia.
  • Critically understand the concept of risk enablement and person- and family-centred risk-enablement approaches to promote people's independence and quality of life.
  • When appropriate to role, understand how to sensitively undertake a range of dementia-specific and age-appropriate psychometric mental and physical health assessments.
  • Know how to interpret the results of assessment and how sensitively to feed back the results and consequences.
  • Have knowledge of the range of potential responses to assessment results, including referral to specialist services, self-directed support and carers' assessments.
  • Have enhanced knowledge of the range of physical, cognitive, psychological and emotional changes and health problems that can be associated with different types of dementia.
  • Have knowledge of the range of strategies that can maximise the strengths and abilities of people with dementia that will enable them to enhance their own health and wellbeing.
  • Have detailed knowledge of the range of evidence-based psychological interventions and therapies to support people with dementia, their families and carers to live well.
  • Appreciate the role of creative and imaginative community experiences that people may choose to support them in living well — for example, engagement in the arts (including music), environmental and outdoor activities, and multi-species animal-assisted opportunities for learning.
  • Appreciate that people with dementia, their families and carers have the potential to build on their strengths and undertake new and valued opportunities and learning together, and how this can have a positive impact on relationships.
  • Appreciate the multiple possible causes of personal or family distress linked to the emotional impact of dementia.
  • Appreciate the complex processes people may experience when adapting to changes in sense of self, relationships and roles.
  • Have detailed knowledge about the range of local services, and statutory, voluntary and peer-support services available that can provide support, interventions and therapy.
  • Have detailed knowledge of the range of pharmacological interventions that may enhance people's memory, including benefits and unwanted side-effects.
  • Appreciate the potential emotional complexities that could be associated with future planning for people with dementia, their families and carers.
  • Appreciate how to engage empathetically in meaningful and timely conversations as part of advance planning.
  • Have detailed knowledge of how sensitively to support people in the creation of a life story that informs understanding of their cultural, spiritual and personal history, and supports implementation of their present and future wishes and choices.
  • Appreciate how legislation can contribute to person-centred planning for people with dementia.
  • Know how to apply the appropriate current legislation on informed consent and confidentiality.
  • Have a detailed understanding of the elements of the relevant legislation that can support people with dementia, such as proxy decision-making or advocacy.
  • Appreciate the role of families and carers who support people with dementia and their right to assessment and support to promote their own health and wellbeing.
  • Appreciate that families and carers are equal and expert partners in care and support.
  • Appreciate that short restorative breaks are key support interventions to maximise carers' contributions and enhance the wellbeing of people with dementia, their families and carers.
  • Have detailed knowledge of the range of restorative break options available.
  • Appreciate the importance and opportunities of risk enablement in the promotion of independent living for people with dementia.
  • Have detailed knowledge of evidence-based approaches and techniques for recognising and assessing neglect and abuse.
  • Have critical understanding of legislation and national and local guidelines and protocols that respond to neglect and abuse.

What staff are able to do (skills)

  • Practise in a way that builds on and expands the natural community resources that can support people with dementia, their families and carers.
  • Facilitate the development of new and creative supportive networks and connections that enable new learning and experiences.
  • Practise in a way that enables people with dementia actively to find the right solutions for them and to choose and access any services they receive, including the use of self-directed support.
  • Apply personal outcomes-focused approaches to working with people, building on their existing capabilities, when assessing the support needs of people with dementia, their families and carers.
  • Work with people as equal partners to undertake person-centred assessments focused on personal outcomes for people with dementia, their families and carers.
  • Engage people with dementia, their families and carers in frequently assessing the usefulness of any support or intervention.
  • Use appropriate approaches and methods to evaluate the impact of the support provided to people, their families and carers in a way that actively involves them and informs continuous improvements.
  • Support people to understand and make informed choices about how to choose technologies that might best support them, and how they can be accessed.
  • Support people to adapt their environment to maintain their independence and enhance their safety and quality of life.
  • Adopt a person-centred approach to assess and identify technological solutions that will enhance quality of life and independence for a person with dementia. Ensure that the technological solutions put in place take account of legal, moral and ethical considerations.
  • Work in partnership with people with dementia, their families and carers to consider and support informed decisions about risk-enablement approaches.
  • Select and sensitively undertake a range of assessments and interpret results to promote health and wellbeing for people with dementia.
  • Sensitively and empathetically discuss and explore findings of assessments with people with dementia, their families and carers to inform future decisions and plans.
  • Enable access to appropriate services and specialists for further advice and support to promote health and wellbeing for people with dementia, their families and carers.
  • Support people with dementia to access physical, cognitive, psychological and emotional support.
  • Apply appropriate psychological and psychosocial skills to work with people with dementia, their families and carers to promote their health and wellbeing.
  • Work sensitively with people with dementia, their families and carers to recognise when additional assistance may be required.
  • Provide support and interventions to assist people with dementia to develop strategies to compensate for diminishing cognitive ability and improve or maintain abilities and skills.
  • Work with people to explore and maximise opportunities to undertake new creative and imaginative experiences to build on their existing skills and interests and develop new learning.
  • Work with people with dementia, their families and carers to identify, and enable them to engage in, activities and opportunities that bring fun and joy to their lives.
  • Using advanced communication skills, provide people with dementia, their families and carers with counselling or psychological therapies/interventions that can support and enhance intimate relationships and/or build resilience and coping strategies.
  • Work with people with dementia, their families and carers to enable them to make informed choices about what support best suits their situation and enables their access to services and support.
  • Ensure that people have the information they need to make informed choices about pharmacological interventions that may enhance memory, including consideration of benefits and unwanted side-effects.
  • Work with people with dementia, their families and carers to monitor and assess the impact of pharmacological interventions on people with dementia and take any action needed to initiate a review.
  • Recognise and interpret cues that indicate when the person with dementia is ready to embark on advance planning.
  • As part of advance planning, sensitively engage in meaningful and timely conversations with the person with dementia, their family and carers.
  • Sensitively and empathetically support the person with dementia to make plans and identify their priorities for the future, including their wishes regarding times when reducing capacity and end of life issues need to be addressed.
  • Support the person with dementia, their family and carers to record any advance decisions and future plans.
  • Work sensitively with people with dementia, their families and carers to support them in developing a life story that reflects and promotes their wishes and choices.
  • Actively support people with dementia, their families and carers to exercise their rights, entitlements and choices.
  • Work with people with dementia, their families and carers to provide guidance and support their understanding of the legal aspects of advance planning in relation to welfare and finance.
  • Work with people to enhance their understanding of the ongoing implications of elements of legislation, including informed consent, proxy decision-making and advocacy.
  • Facilitate families and carers to access assessment and support that promotes their own health and wellbeing.
  • Engage and work with families and carers as equal and expert partners in care and support.
  • Encourage and support people with dementia, their families and carers to identify restorative and short-break interventions that meet their individual needs.
  • Support people with dementia in risk enablement through involvement in risk assessment and management.
  • Work with people with dementia to assess risk, including areas of potential neglect and abuse.
  • Take appropriate action that reflects legislation and national and local guidelines and protocols to prevent and respond to people who are experiencing neglect and abuse.

Stage - Living well with increasing help and support

What staff know (knowledge)

  • Recognise diversity of people with dementia, their families and carers.
  • Appreciate the importance of continued engagement in valued relationships and meaningful activities for people with dementia as their dementia progresses.
  • Appreciate the need to balance people's dependence and interdependence to maximise social inclusion.
  • Have detailed knowledge of human rights-based and adult protection legislation and how to apply appropriate measures and safeguards for people with dementia.
  • Appreciate how legislation can contribute to person-centred planning and maximise the ability of people with dementia to communicate their decisions.
  • Appreciate the requirements of appropriate current legislation on informed consent, confidentiality and advance planning, and the implications for the person with dementia, their family and carers.
  • Appreciate the principles of determining capacity and how to apply these in any given situation.
  • Have detailed knowledge of a range of tools and techniques, including augmentative and alternative communication methods, that can support the person with dementia in their decision-making.
  • Appreciate how diminishing capacity in the person with dementia potentially can impact on their ability to effectively communicate their choices, wishes and needs.
  • Appreciate the contribution that can be made to the quality of life of people with dementia by the timely gathering of personal details and information from all sources, such as families, carers and friends.
  • Have a detailed understanding of how concurrent physical and mental health problems can impact on people with dementia and influence the progression of their dementia.
  • Appreciate the complexities co-morbid conditions present for people with dementia.
  • Have a detailed understanding of the concept and consequences of frailty and how these can impact on people with dementia.
  • Appreciate that 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.
  • Know how to apply strengths-based approaches to support people with dementia to maintain their physical and mental health and wellbeing.
  • Have detailed knowledge of the distinguishing signs of depression and delirium in people with dementia and how to initiate appropriate responses, support and treatment options.
  • Have critical knowledge of environmental and cognitive issues for people with dementia that can increase the risk of slips, trips and falls.
  • Appreciate how visual impairment and perceptual changes can increase the risk of falls for people with dementia.
  • Have detailed knowledge of national and local guidance relating to use of medication for people with dementia.
  • Have detailed knowledge of the specific pharmacological issues relating to people with dementia in responding to both physical and psychological needs, including polypharmacy and covert medication.
  • Have detailed knowledge of the range of assessment tools and interventions that support the maintenance of physical health.
  • Appreciate how dementia can affect people's continence and understand the interventions that people can use to support continence management.
  • Appreciate the particular environmental and individual physical and cognitive issues for people with dementia that can intensify the possibility of slips, trips and falls.
  • Appreciate both the positive and negative impacts of the physical environment on the quality of life of people with dementia as their dementia progresses.
  • Have detailed knowledge of the evidence-based assistive and innovative technologies available that support and enhance independent living.
  • Have knowledge of best practice in environmental adaptations that can contribute to independence, wellbeing, privacy and safety of people with dementia.
  • Have a detailed understanding of the range of environmental and person-centred approaches that can reduce and alleviate stress, prevent distress and promote wellbeing for people with dementia.
  • Have a detailed understanding of the complex behavioural changes and their causes that indicate people with dementia are distressed.
  • Have detailed knowledge of multi-disciplinary approaches to prevention of distress and promotion of psychological wellbeing.
  • Appreciate the potential for people with dementia affected by trauma to experience distress when memories of the trauma are triggered by circumstances/relationships/situations that bear some similarity to previous trauma.
  • Appreciate the importance of providing safety and building trust, giving choice and control, and engaging collaboratively with people with dementia to reduce the likelihood of triggering trauma-related distress.
  • Appreciate that changes in behaviour can be responded to with appropriate approaches and interventions based on a detailed knowledge of the person with dementia.
  • Have detailed knowledge and understanding of how distressed behaviour can be an expression of unmet needs.
  • Have detailed knowledge and understanding of the range of psychological, psychosocial and environmental interventions that can prevent or ease distress.
  • Have detailed knowledge and understanding of the range of multi-sensory stimulation, recreational activities and combined therapies that promote wellbeing and can prevent or alleviate distress in people with dementia.

What staff are able to do (skills)

  • Work in partnership in a way that reflects the diversity of people with dementia, their families and carers to respond positively and constructively to their specific situation.
  • Support families and carers of people with dementia in working through the life and relationship changes that occur as dementia progresses.
  • Utilise the social network and spiritual supports familiar to the person to maintain contact with their own community, family, friends and carers.
  • Actively promote dignity and respect for people with dementia and challenge any discriminatory practices that may compromise their right to dignity, respect and safety.
  • Proactively ensure that people with dementia are supported to exercise their rights and choices, or their previously determined choices are upheld wherever possible.
  • Actively support people with dementia, their families and carers to implement legal aspects regarding informed consent, confidentiality and advance planning.
  • Actively seek the person's consent before any intervention is carried out and at intervals commensurate with the intervention.
  • When appropriate to role, contribute to assessment of capacity.
  • Ascertain whether the person with dementia has appropriate substitute decision-making arrangements in place relevant to the situation and intervention, and ensure they are actioned.
  • Take appropriate action where the person with dementia has no guardian or attorney appointed.
  • Actively support people with dementia to maximise their ability to communicate their needs, wishes and desires using their preferred method of communication.
  • Work in partnership with people with dementia, their families, carers and friends to gather pertinent information to support the promotion of the best quality of life.
  • Adopt a strengths-based approach to holistically assessing the person's physical and mental health needs and monitor changes and deteriorations in their health.
  • Promote and maintain people's current abilities and strengths related to physical and mental health and wellbeing.
  • Instigate and/or involve others in providing the most appropriate treatment for depression and delirium.
  • When required and appropriate to role, use critical thinking skills to identify and implement the most appropriate interventions and treatment for depression and delirium.
  • Undertake a holistic assessment of the potential cognitive and visual changes that may place the person at risk of slips, trips and falls.
  • Monitor and document the risk of slips, trips and falls for people with dementia.
  • Respond appropriately to mitigate risk and promote safety, independence and wellbeing.
  • Where medication use is indicated, ensure it adheres to national and local guidance relevant to people with dementia.
  • Sensitively use critical thinking in conjunction with a range of assessment tools to support good nutrition, skin care, continence and pain management for people with dementia.
  • Use a range of assessment tools and interventions that support the maintenance of physical health.
  • Ensure that the dignity of people with dementia is maintained through use of individualised prompts to maintain continence.
  • Work with people with dementia, their families and carers and other agencies to assess what adaptations to the physical environment would help promote independence and minimise the amount of support required.
  • Where appropriate, assess needs and engage with assistive and innovative technology to enhance people's independence.
  • Use signage, lighting and familiar objects to maximise orientation and reduce confusion.
  • Support and enable people with dementia to remain active and mobile.
  • Support people with dementia, their families and carers to access assistive and innovative technologies that support safety and enhance their independence.
  • Support people with dementia, their families and carers to use technology to enable them to continue with outdoor activities.
  • Engage in implementing best practice in environmental adaptations and person-centred approaches that can reduce and alleviate stress, prevent distress and contribute to the privacy and safety of people with dementia.
  • Use a range of assessment strategies and tools to identify changes in the emotional wellbeing of people with dementia.
  • Recognise changes in emotional wellbeing in people with dementia.
  • Assist people with dementia, their families, carers and wider networks to identify how to maintain psychological wellbeing and prevent stress and distress.
  • Contribute to a multi-disciplinary approach to prevention of distress and promotion of psychological wellbeing.
  • Take a person-centred approach as part of a multi-disciplinary team to assess the potential causes of distressed behaviours.
  • Contribute to a multi-disciplinary approach in how to respond to distress, understanding various models that can inform a comprehensive assessment.
  • Apply approaches/interventions consistent with trauma-informed practice and effective safety and stabilisation techniques, where applicable.
  • Use knowledge of the person with dementia to tailor responses to their expression of stress and distress.
  • Use proactive and preventative strategies to support the person with dementia, their family and carers to remain stress-free and reduce the likelihood of distressed behaviour arising.
  • Creatively use a combination of appropriate interventions, based on individual needs, to promote wellbeing and prevent and alleviate distress.

Stage - End of life and dying well

What staff know (knowledge)

  • Appreciate the importance of communication in the delivery of person-centred palliative and end of life care for people with dementia.
  • Have detailed knowledge of best practice in a range of approaches to gathering information from people with dementia, their families and carers at end of life.
  • Critically evaluate the evidence base, frameworks, standards and tools that underpin delivery of person-centred palliative and end of life care for people with dementia.
  • Have critical understanding of the interdependence and complexity of physical, psychological, emotional and spiritual care needs of people with dementia, their families and carers in relation to palliative and end of life care.
  • Appreciate the importance of values and beliefs in the delivery of person-centred palliative and end of life care for people with dementia.
  • Understand when to seek specialist support and guidance from colleagues to address the specific physical, psychological, emotional and spiritual care needs of a person with dementia.
  • Appreciate the important role of family, carers and friends in the provision of palliative and end of life care of people with dementia.
  • Understand the importance of involving families and carers and keeping them well informed about options.
  • Appreciate when action is needed to advocate on behalf of families and carers in relation to implementing the wishes of the person with dementia.
  • Have detailed knowledge of pain assessment and how to distinguish between chronic and acute pain, including an appreciation that dementia impairs the person's ability to articulate/describe their pain.
  • Appreciate the importance of constant review and observation for changes in condition, signs and symptoms.
  • Have critical knowledge of pharmacological and non-pharmacological interventions/therapies to prevent and alleviate stress and distress.
  • Appreciate that possible additional distress may manifest in behavioural symptoms that require sensitive responses.
  • Have detailed knowledge of the indicators that suggest the person with dementia is nearing the end of their life.
  • Appreciate the requirement to remain up to date with changes to best practice guidance, legislation and policy regarding palliative care and end of life care.
  • Critically analyse the legal and ethical framework necessary to ensure the wishes of the person with dementia are heard.
  • Understand how to apply the implications of advance plans, advance directives and proxy decision-makers on treatment, interventions and care, including expressed refusals.
  • Have detailed knowledge and understanding of the legal and policy position regarding resuscitation in relation to people with dementia.
  • Appreciate the support needs of family, carers and friends, including after the death of the person with dementia.
  • Appreciate the importance of spiritual support at the end of life for some people with dementia, their families and carers.
  • Appreciate the psychological and emotional effects on families, carers and friends when the person with dementia dies.
  • Have detailed knowledge of the range of psychological, pharmacological and community supports for carers and family members that can assist with loss, coping skills and the maintenance of mental health and wellbeing.
  • Recognise when there is a need to continue bereavement support for carers and have knowledge of the different approaches this might involve.

What staff are able to do (skills)

  • Sensitively use advanced communication skills to gather information to support the person with dementia, their family and carers to promote person-centred palliative and end of life care that reflects their values and beliefs.
  • 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 person-centred care that promotes comfort through palliative and end of life care.
  • 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.
  • 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.
  • Practise in a way that is sensitive to, respects and responds to potential conflicts between the wishes of the person, their family and carer, and seek expert advice when this occurs.
  • Use critical thinking in conjunction with a range of assessment tools to identify and respond to acute and chronic pain.
  • Explore and assess unexplained changes in behaviour or signs of distress and intervene appropriately.
  • Consider both pharmacological and non-pharmacological interventions/therapies and implement appropriately and in line with any preferences the person with dementia may have articulated.
  • Respond appropriately when changes indicate that a person is nearing the end of their life.
  • Provide support that meets the specific needs of people with dementia to promote comfort and dying well.
  • Ascertain whether advance planning has been undertaken and is recorded.
  • Use the person with dementia's advance plan and advance directive and confer with proxy decision-makers relating to their choices for palliative and end of life care.
  • In the absence of an advance plan, advance directive and proxy decision-makers, work with families and carers to ensure the person with dementia's choices for palliative and end of life care are met.
  • Provide support for family, carers and friends, including following the death of the person with dementia.
  • Meet the specific psychological, emotional and spiritual needs of the person with dementia and promote comfort and dying well.
  • Provide psychological and emotional support for families and carers when the person with dementia dies.
  • Support families and carers of people with dementia to access social/psychological and pharmacological supports as appropriate.
  • Identify when families and carers of people with dementia require referral for specialist assessment or intervention related to their loss.
  • Provide ongoing support, guidance and advice for carers and families, including after the death of the person with dementia.

Contact

Email: dementiapolicy@gov.scot