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

The structure of the framework

Levels of Knowledge and Skills

Each level defines the knowledge, skills and behaviours specific to the worker's role in relation to dementia. Rather than being hierarchical, the levels are concerned with levels of responsibility in relation to working with people with dementia which will vary greatly across organisations and sectors. Each level defines the expertise, specific to their role in relation to dementia, that a worker must have, rather than in relation to their seniority within the organisation or their profession.

The 'Dementia Informed Practice Level' provides the baseline knowledge and skills required by all staff working in health and social care settings including a person's own home.

The 'Dementia Skilled Practice Level' describes the knowledge and skills required by all staff that have direct and/or substantial contact with people with dementia and their families and carers.

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

The 'Expertise in Dementia Practice Level' outlines the knowledge and skills required for health and social care staff who by virtue of 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 each level are constructed in an incremental way, for example staff that operate at the 'Dementia Enhanced Practice' level would also possess the knowledge and skills, attitudes and behaviours described at all preceding levels. Given the scope of the workforce across health and social services this framework does not identify specific health and social services staff roles in relation to the framework domains. Each individual staff member and their employer must take responsibility in ensuring they correctly interpret and apply the content and aspirations of the framework to their role in relation to working with people with dementia, their families and carers.

Stages of the Dementia Journey

There is well documented evidence that dementia has a recognised pathway of progression and the framework has incorporated this as the needs of a person with dementia, and their family and carers will be different at different stages of the condition. Whilst acknowledging the life changing impact, challenges and difficulties that often surround receiving a diagnosis of dementia; the framework recognises that receiving a diagnosis is not the starting place. Striving to prevent the onset of dementia and the maintenance of good health and maximising wellness, are general ambitions for all of us in an ageing and health conscious society and there are specific actions for workers involved in the delivery of dementia services and care settings in this regard.

The 4 Stages of the 'dementia journey' identified in the framework are:

• Keeping well, prevention, and finding out it's dementia
• Living well
• Living well with increasing help and support
• End of life and dying well

Quality of life outcome indicators for people with dementia, and families and carers

There is a growing body of research on quality of life indicators for people with dementia. Research from the Alzheimer's Society ¹ (2010) states that it is perfectly possible to maintain a good quality of life following a diagnosis of dementia and that the domains that feature in generic quality of life measures may be of as much relevance to people with dementia as the more dementia-specific domains in health related quality of life measures. The framework incorporates quality of life (QoL) outcome indicators developed from a review of the literature. These are an integral part of the framework and are intended to encourage workers and services to consider the impact and end result of the support, care, interventions and treatments they provide against these indicators. The diagram on page 10 shows how the QoL indicators map against the Standards of Care for Dementia in Scotland domains.

"Since your diagnosis you are much busier and much more active than you were before"

(Family Member)

Through our eyes, a life with dementia

Standards of Care for Dementia in Scotland

• I have the right to a diagnosis.
• I have the right to be regarded as a unique individual and to be treated with dignity and respect.
• I have the right to access a range of treatment and supports.
• I have the right to end of life care that respects my wishes.
• I have the right to be as independent as possible and be included in my community.
• I have the right to have carers who are well supported and educated about dementia.

Knowledge and Skills Framework QoL Outcome Indicators

• People with dementia have access to a timely and accurate diagnosis of dementia.
• People with dementia feel empowered and enabled to exercise rights and choice, maintain their identity and to be treated with dignity and equity.
• People with dementia maintain their best level of physical, mental, social and emotional wellbeing.
• People with dementia have access to individuals, groups and organisations that can support their spiritual or personal beliefs and reflect their cultural wishes.
• People with dementia have access to quality services and can continue to participate in community life and valued activities.
• People with dementia feel safe and secure and are able to be as independent as possible.
• People with dementia are able to maintain valued relationships and networks, and have the opportunity to develop new ones both personal and professional.
• People with dementia, 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.

" Once the word dementia comes into a conversation, people more or less dismiss you. They think you have no views, no thoughts of your own; you can't speak for yourself, you can't do things for yourself and you have a very very difficult job persuading these people to listen to you to take you seriously, and to get help of any manner or kind because they're very dismissive. All of a sudden you become useless. This is not the case."

Through our eyes, a life with dementia