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Promoting Excellence: A framework for all health and social services staff working with people with dementia, their families and carers

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Enhanced Dementia Practice Level

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

" People with dementia shouldn't be dismissed just because they have dementia, because we're asking for things and doing things that nobody has done and asked for before."

Through our eyes, a life with dementia

Enhanced Dementia Practice Level

Stage in the dementia journey

Keeping well, prevention and finding out it's dementia

Outcome

What workers know (knowledge)

What workers are able to do (capability/skill/ability)

People with dementia have access to a timely and accurate diagnosis of dementia.

  • Understand the evidence base, strategies and health and wellbeing promoting behaviours that may help prevent some forms of dementia.
  • Understand the complex issues that need to be addressed and explored by people, their families and carers facing a potential diagnosis of dementia.
  • Detailed knowledge of the different types of dementia and the implications and support needs for the person on receiving a diagnosis.
  • Detailed knowledge of the differences between dementia and other physical and mental health problems, in particular delirium, depression.
  • Knowledge of a range of evidence based screening tools which may be used to measure cognition in people with dementia.
  • Raise public awareness of the strategies and health and wellbeing promoting behaviours that may help prevent some forms of dementia.
  • Support people to explore the benefits and risks in receiving a diagnosis of dementia.
  • Discuss sensitively with the person with dementia their options in relation to referral to memory clinics and specialist services.
  • Use basic screening tools to assess memory, orientation, verbal and perceptual skills.
  • Use and interpret feedback from evidence based screening tools for measurement of cognition.

People with dementia are able to maintain valued relationships and networks, and have the opportunity to develop new ones both personal and professional.

  • Detailed knowledge of local services and specialists, their roles and functions and the services they offer for assessment and advice on memory problems.
  • Understand the potential impact of a diagnosis of dementia on relationships, roles and expectations.
  • Understand the potential impact of a diagnosis of dementia on a diverse range of people including people from range of ethnic and cultural groups, people with learning disabilities and younger people.
  • Knowledge of the increased risk of developing dementia for people with learning disabilities.
  • 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.
  • Ascertain the information and education needs of the person with dementia, their families and carers and provide or signpost as appropriate.
  • 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 with dementia and people with a learning disability are supported to access chosen services in an equitable way.

People with dementia have access to quality services and can continue to participate in community life and valued activities.

  • Understand the concept of an outcomes focussed approach in dementia care, treatment and support.
  • Understand the importance of identifying and focusing on outcomes that are important to the person with dementia.
  • Knowledge of evidence based, solution focussed psychological interventions to address the impact of diagnosis on the wellbeing of people with dementia, their families and carers.
  • Engage with the person with dementia to establish the outcomes that are important to them, and support them to prioritise and achieve these outcomes.
  • Maintain a positive and solution focussed approach which encourages and supports the person with dementia, their family and carers to build on their strengths and abilities.
  • Provide advice and education for the person with dementia, their family and carers about the management of their own health and wellbeing.

People with dementia have access to individuals, groups and organisations that can support their spiritual or personal beliefs and reflect their cultural wishes.

  • Understand the potential risk of social isolation that can follow a diagnosis of dementia,
  • Understand the importance for people with dementia, their families and carers, to continue to engage in socially included roles, relationships and activities that support their independence and wellbeing.
  • Understand the importance of peer and community support for people with dementia, their families and carers.
  • Understand the importance of people maintaining the spiritual and cultural aspects of life following a diagnosis of dementia.
  • Work to maximise social inclusion by supporting people with dementia, families and carers, to access community organisations and supports and continue to engage in meaningful activity.
  • Engage with the person, their family and carers, to find out how their spiritual and cultural beliefs can be supported and harnessed to maintain their valued quality of life.

People with dementia feel empowered and enabled to exercise rights and choice, maintain their identity and to be treated with dignity and equity.

  • Understand the human and legal rights of people with dementia to make decisions and to take risks in the context of their own lives.
  • Detailed knowledge of the principles and key provisions of legislation such as the Human Rights Act (1998), Mental Health (Care and Treatment) (Scotland) Act (2003) Adults with Incapacity Act (2000), Adult Support and Protection Act (2007) and the Equalities Act (2010).
  • 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 to safeguard the best interests of people with dementia, families and carers.
  • Sensitively work with the person to Identify the elements of Advanced Planning which they wish to undertake.

People with dementia maintain their best level of physical, mental, social and emotional wellbeing.

  • Detailed knowledge and understanding of health promotion and its impact on the progression of dementia.
  • Understand the impact and potential losses associated with a diagnosis of dementia and the range of possible reactions, including emotional distress.
  • Knowledge and understanding of the causes and signs of stress and distress for the person with dementia, their family and carers.
  • Knowledge of the signs of common mental and physical health problems for people with dementia, families and carers.
  • Knowledge of local services that provide specialist psychological interventions and therapies.
  • Actively support the person with dementia to access physical health assessments, treatments and services to maintain or improve their physical health.
  • Identify and respond sensitively to verbal and non verbal cues from the person with dementia, their families and carers that may indicate psychological distress.
  • Recognise when a person with dementia, their families and carers, are experiencing anxiety and/or depression and make referral to specialists when necessary.

" I have a diagnosis of dementia and I like a challenge. Each day is a fascination."

Through our eyes, a life with dementia

Stage in the dementia journey

Living well with dementia

Outcome

What workers know (knowledge)

What workers are able to do (capability/skill/ability)

People with dementia are able to maintain valued relationships and networks, and have the opportunity to develop new ones both personal and professional.

  • Understand the importance of existing and new, natural community resources that can provide support for people with dementia, their families and carers, to maintain a valued and socially included quality of life.
  • Understand the concepts of person-centred care and personalisation and the implications for how services and individual support is delivered.
  • Knowledge and understanding of self directed support and how this can be enabled and maximised to support people with dementia.
  • Contribute to practices which build on and expand natural community resources for people with dementia, their families and carers.
  • Facilitate the development of new and supportive networks and connections, e.g. peer support, group support and virtual and internet supports.
  • Contribute to practices that enable the person with dementia to actively find the right solutions for them, and to choose and access any services they receive including the use of self directed support.

People with dementia feel safe and secure and are able to be as independent as possible.

  • Understand the principles, approaches and practices that promote outcomes focussed approach to dementia care, treatment and support.
  • Understand the importance of, and approaches and methods that should be used to measure the impact of dementia support against outcomes.
  • Understand how environmental adaptations, assistive and innovative technology and tele-healthcare can enhance the quality of life of the person with dementia.
  • Knowledge of the range of assistive and innovative technologies available that support independent living and the evidence base for their use.
  • Adopt an outcomes based approach, building on peoples existing capabilities, when assessing the support needs of people with dementia, families and carers.
  • Undertake person-centred assessments, focussed on the outcomes for the person with dementia.
  • Evaluate the impact of the support provided to people, their families and carers in a way that actively involves them and informs continuous improvements.
  • Enable people with dementia to address the environmental issues that may provide challenges to their safety and quality of life.

People with dementia maintain their best level of physical, mental, social and emotional wellbeing.

  • When appropriate to role, understand how to sensitively undertake a range of dementia specific psychometric, age appropriate, mental and physical health assessments.
  • Knowledge of how to interpret the results of assessment and how to feed back results sensitively.
  • Knowledge of a range of responses to assessment results including referral to specialists, self-directed support and carer's assessments.
  • Knowledge of the range of strategies that maximise the strengths and wellbeing of the person with dementia to engage in self management and self help.
  • Knowledge of the range of physical conditions that can be associated with the different types of dementia, e.g. visual difficulties, vascular conditions.
  • Discuss findings of assessments sensitively and empathically and promote access to appropriate services and specialists for further advice and support.
  • Use appropriate psychological and psychosocial skills to work with the person with dementia, their family and carers.
  • Work sensitively with the person, their family and carers to recognise when additional assistance may be required.

" People should be allowed to take a certain amount of risk. You've got to be allowed to stumble and fall occasionally. You've got to be encouraged to take yourself out of the comfort zone where there's no nothing. There's also no life."

Through our eyes, a life with dementia

Stage in the dementia journey

Living well with dementia

Outcome

What workers know (knowledge)

What workers are able to do (capability/skill/ability)

People with dementia have access to quality services and can continue to participate in community life and valued activities.

  • Knowledge of evidence based psychological interventions and therapies for people with dementia, their families and carers.
  • Understand the possible causes of personal or family distress linked to the emotional impact of the symptoms of dementia.
  • Understand the processes involved in adapting to changes in sense of self, relationships and roles.
  • Knowledge of specialist services that can provide therapy, support and self-help techniques.
  • Knowledge of the range of pharmacological interventions that may enhance memory.
  • Support the person with dementia to access physical, cognitive, psychological and emotional support, treatments and specialist services including self help resources.
  • Provide support and interventions to assist the person with dementia to maintain existing cognitive skills and devise strategies to cope with reducing cognitive ability.
  • When appropriate to role, provide the person with dementia, their family and carers with counselling or psychological therapies that can support and enhance intimate relationships or build coping skills.
  • Raise awareness of the potential benefits of pharmacological interventions that may enhance memory and when appropriate to role monitor the impact on the person.

People with dementia feel empowered and enabled to exercise rights and choice, maintain their identity and to be treated with dignity and equity.

  • Understand the emotional complexities in relation to future planning for the person with dementia, families and carers.
  • Knowledge of how to empathically engage with people facing difficult and potentially distressing decisions involved in advanced planning.
  • Knowledge of how to sensitively support people in the creation of a life story which form the basis for understanding their cultural, spiritual and personal history, and supports the implementation of their present and future wishes and choices.
  • Recognise and interpret cues that indicate when the person with dementia is ready to embark on advance planning.
  • Sensitively engage in difficult conversations that may be upsetting to the person with dementia, their family and carers.
  • Sensitively and empathically 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.
  • 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.

People with dementia and their families, friends and carers, have access to the information, education and support that enhances the wellbeing of the person with dementia and those that support them.

  • Understand how legislation can contribute to person-centred planning for people with dementia.
  • Knowledge of the appropriate current legislation on informed consent and confidentiality.
  • Knowledge of the elements of the relevant legislation that can support people with dementia, e.g. power of attorney, guardianship and 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.
  • Actively support the person with dementia, their family and carers, to exercise their rights, entitlements and choices.
  • Provide information and guidance for people with dementia, their families and carers, regarding legal aspects of advance planning in relation to welfare and finance.
  • Provide information for the person with dementia, their family and carers, about the ongoing implications for them of legislation regarding informed consent, guardianship, power of attorney and advocacy.
  • Engage with families and carers as equal and expert partners in care and support.

People with dementia feel safe and secure and are able to be as independent as possible.

  • Understand that respite and short breaks are key support intervention to maximise carer's contribution and enhance the person with dementia wellbeing.
  • Understand the importance and opportunities of risk enablement in the promotion of independent living for people with dementia.
  • Knowledge of evidence based approaches and techniques for assessing neglect and abuse and appropriate responses.
  • Encourage and support the person with dementia, their family and carers, to identify respite 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 the person with dementia to assess risk, including areas of potential neglect and abuse.

Stage in the dementia journey

Living well with increasing help and support

Outcome

What workers know (knowledge)

What workers are able to do (capability/skill/ability)

People with dementia are able to maintain valued relationships and networks, and have the opportunity to develop new ones both personal and professional.

  • Understand the importance of continued engagement in valued relationships and meaningful activities, for people with dementia, as their condition progresses.
  • Knowledge and recognition of the need to balance dependence and interdependence to maximise social inclusion.
  • Knowledge of human rights-based and adult protection legislation and how to apply appropriate measures and safeguards for people with dementia.
  • Understand how legislation can contribute to person-centred planning and maximise a person with dementia's ability to communicate their decisions.
  • Work in partnership in a way that reflects diversity of people with dementia, their families and carers to positively and constructively respond to their specific situation.
  • Support families and carers of people with dementia in working through the life and relationship changes which 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 the person with dementia and challenge any discriminatory practices that may compromise the person's right to dignity respect and safety.
  • Proactively ensure that the person with dementia is supported to exercise their rights and choices or their previously determined choices are upheld wherever possible.

People with dementia feel safe and secure and are able to be as independent as possible.

  • Understand the requirements of appropriate current legislation on informed consent, confidentiality and advance planning and the implications for the person with dementia, their families and carers.
  • Knowledge of the principles of determining capacity in any given situation.
  • Knowledge of a range of communication tools and techniques that can support the person with dementia in their decision making.
  • Knowledge of how potentially reducing capacity in the person with dementia can impact on their ability to effectively communicate their choices, wishes and needs.
  • Actively support the person 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.
  • Ascertain whether the person with dementia has a guardian or attorney appointed.
  • Refer for assessment when no guardian or attorney has been appointed.
  • Actively support the person with dementia to maximise their ability to communicate their needs wishes and desires.

People with dementia maintain their best level of physical, mental, social and emotional wellbeing.

  • Understand the contribution that can be made to quality of life of the person with dementia, by timely gathering of personal details and information from all sources, for example families, carers and friends.
  • Understand how physical health problems can particularly impact people with dementia and influence the progression of dementia.
  • Knowledge of the distinguishing signs of dementia, depression and delirium and appropriate responses and treatment options.
  • Work in partnership with the person with dementia, their family and carers, 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 health needs and observe for changes and deteriorations in the persons health.
  • Promote and maintain the person's current abilities and strengths related to health.
  • Instigate and/or involve others in providing the most appropriate treatment for depression and delirium.

People with dementia have access to quality services and can continue to participate in community life and valued activities.

  • Aware of national and local guidance relating to use of medication for people with dementia.
  • Understand the specific pharmacological issues relating to people with dementia in responding to both physical and psychological needs, including poly-pharmacy and covert medication.
  • Understand the range of assessment and interventions that support the maintenance of physical health.
  • Understand how dementia can affect people's continence and the interventions that can be used to support this.
  • Understand the particular environmental and individual physical and cognitive issues for people with dementia that can intensify the possibility of slips, trips and falls.
  • Understanding of the impact of the physical environment on the quality of life of the person with dementia as their conditions progresses.
  • Where medication use is indicated ensure it adheres to national and local guidance relevant to people with dementia.
  • Sensitively use a range of assessment tools to support good nutrition, skin care, continence and pain management for people with dementia.
  • Maintain the person with dementia's dignity through use of individualised prompts to maintain continence.
  • Work with the person with dementia, their family and carers, and other agencies to make adaptations to the physical environment that can promote independence and minimise the amount of help required.

People with dementia maintain their best level of physical, mental, social and emotional wellbeing.

  • Knowledge of the range of assistive and innovative technologies available that support independent living, and the evidence base for their use.
  • Understand the range of environmental and person-centred approaches which can prevent behavioural distress and promote wellbeing for people with dementia.
  • Understand the complex behavioural changes and their causes that indicate people with dementia are distressed.
  • Use signage, lighting and familiar objects to maximise orientation and reduce confusion.
  • Assess need and engage with assistive and innovative technology, where appropriate, such as pressure mats or door alarm to maintain the person's independence.
  • Support and enable the person with dementia to remain active and mobile.
  • Engage in implementing best practice in environmental adaptations can contribute to the privacy and safety of people with dementia.
  • Take a person-centred approach to assessing distressed behaviour which may be perceived as challenging.
  • Use a range of assessment strategies to identify changes in the person with dementia's emotional wellbeing.

People with dementia maintain their best level of physical, mental, social and emotional wellbeing.

  • Understand that changes in behaviour can be responded to with appropriate interventions based on a knowledge of the person with dementia.
  • Recognise changes in emotional wellbeing in the person with dementia.
  • Use knowledge of the person with dementia in responding to their expression of stress and distress.

People with dementia are able to maintain valued relationships and networks, and have the opportunity to develop new ones both personal and professional.

  • Detailed knowledge and understanding that distressed behaviours perceived as being challenging are often an expression of unmet needs.
  • Understand the range of psychological, psychosocial and environmental interventions which can ease behavioural distress.
  • Understand the range of multi-sensory stimulation, recreational activities and combined therapies that promote wellbeing and alleviate distress in people with dementia.
  • Proactively intervene to support the person with dementia, their family and carers to manage stress and avert distress.
  • Creatively use a combination of different levels of intervention, based on individual needs, to promote wellbeing and alleviate distress.

Stage in the dementia journey

End of life and dying well

Outcome

What workers know (knowledge)

What workers are able to do (capability/skill/ability)

People with dementia feel empowered and enabled to exercise rights and choice, maintain their identity and to be treated with dignity and equity.

  • Knowledge of the complexity associated with the progression of dementia and the signs and symptoms associated with end of life.
  • Knowledge of best practice and a range of approaches to gathering information from people with dementia, their families and carers at end of life stage.
  • Knowledge of the implications of advance planning 'power of attorney', guardianship, advance directives including any regarding refusal of treatment.
  • Knowledge and understanding of the legal and policy position regarding resuscitation in relation to people with dementia.
  • Ascertain whether advance planning has been undertaken and is recorded.
  • Use the person with dementia's advanced plan relating to their choices for palliative end of life care.
  • In the absence of an advanced plan work with families and carers to ensure the person with dementia's choices for palliative end of life care are met.

"Get rid of the stereotypical images they have of people with dementia and how dementia affects people because it affects everybody differently."

(Family Member)

Through our eyes, a life with dementia

Stage in the dementia journey

End of life and dying well

Outcome

What workers know (knowledge)

What workers are able to do (capability/skill/ability)

People with dementia feel empowered and enabled to exercise rights and choice, maintain their identity and to be treated with dignity and equity.

  • Understand the importance of keeping carers and families well informed about options at this stage.
  • Understand the need may arise to advocate on behalf of carers in relation to implementing the wishes of the person with dementia.
  • Understand the requirement to remain up to date with changes to best practice guidance, legislation and policy regarding palliative care, end of life care and death and implement this in relation to end of life care for people with dementia.
  • Recognise that there can be potential conflicts between the person and family and carers wishes, and seek expert advice when this occurs.
  • Communicate and listen in a sensitive manner when discussing difficult and complex end of life concerns with people with dementia, their families and carers.

People with dementia maintain their best level of physical, mental, social and emotional wellbeing.

  • A thorough knowledge and understanding of palliative care standards, frameworks and tools to help support good palliative care and how to use them with people with dementia.
  • Understand possible additional distress may manifest in behavioural symptoms which require sensitive responses.
  • Understand the importance of constant review and observation for changes in condition, signs and symptoms.
  • Understand the need to assess pain thoroughly, how to distinguish between chronic and acute pain and that dementia impairs the persons' ability to articulate/describe their pain.
  • Understand when to seek specialist dietetic services, support and guidance from colleagues.
  • Understand the need to support physical wellbeing of the person with dementia as far as possible at end of life.
  • Use a range of assessment tools and techniques to carry out assessment and review appropriately and consistently including assessment of pain both chronic and acute and all needs over and above dementia.
  • Explore 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.

People with dementia have access to individuals, groups and organisations that can support their spiritual or personal beliefs and reflect their cultural wishes.

  • Understand the importance of spiritual support at the end of life for some people with dementia, their families and carers.
  • Understand the psychological and emotional effects of dying which can affect a person with dementia, their family and carers.
  • Awareness of when there is a need to continue bereavement support for carers.
  • Understand the range of psychological, pharmacological and community supports for carers and family members which can assist with loss, coping skills and the maintenance of mental health and wellbeing.
  • Support people with dementia, their families and carers to meet their spiritual needs.
  • Encourage, enable and involve carers, so far as desired and appropriate, in assisting in the provision of care for the person with dementia.
  • Support families and carers of people with dementia to seek social and/or psychological supports as appropriate.
  • Provide ongoing support, guidance and advice for carers and families including after the death of the person with dementia.