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Essentials of dementia: dementia awareness for professionals and practitioners

Education, training and skills acquisition are a hallmark of good dementia care.

 

Dementia represents one of the biggest global health challenges facing society today. Proposed dementia care pathways involve many disciplines and health sectors, and a global priority is the continuing education of professionals delivering care (World Health Organisation, 2012).

 

In other words – “dementia awareness” should definitely apply to all practitioners and professionals too.

 

The aim is to support all professionals and practitioners to be responsive to the needs of people with dementia, to continue to develop their skills and expertise and to improve the contribution they make to achieving the best outcomes for people with dementia, their carers and families.

 

In England, it is estimated that around 676,000 people have dementia. In the whole of the UK, the number of people with dementia is 850,000.

 

At the heart of the task to improve dementia care is a workforce not sufficiently equipped to work with people with dementia. For example, people with dementia aged over 65 years occupy one quarter of hospital beds at any one time.

 

Key stakeholders are, however, beginning to respond to the agenda.

 

Some time ago, the Alzheimer’s Society “Counting the cost” (2009) report found that people with dementia are staying in hospital longer than those without dementia, with a detrimental impact on the individual’s dementia and physical health.

 

Around the same time, the Department of Health published the National Dementia Strategy for England in 2009, “Living well with dementia”, which committed to developing an informed and effective workforce was identified as key to delivering the Strategy.

 

It is widely believed that, to support people in living well with dementia, we need to continue to make progress on improving awareness and understanding of dementia to transform the way society thinks and acts about dementia. Every organisation and every person who makes up a community has both a role and a responsibility to act.

 

There is substantial interest from all parts of the health and care spectrum with a real demand for knowledge, guidelines and information from prevention to end of life care and everything in between.

 

Dementia Core Skills Education and Training Framework

 

This Dementia Core Skills Education and Training Framework is an extraordinarily useful and helpful resource which details the essential skills and knowledge necessary across the health and social care spectrum.

 

The Dementia Core Skills Education and Training Framework was commissioned and funded by the Department of Health and developed in collaboration by Skills for Health, Health Education England, Skills for Care and an expert advisory group that ensured multi-organisational and multi-stakeholder representation. Launched in October 2015, it is a comprehensive resource which details the essential skills and knowledge necessary for staff across the broad and varied spectrum of health and social care settings and will support organisations to:

 

  • standardise the interpretation of dementia education and training
  • guide the focus and aims of dementia education and training delivery through key learning outcomes
  • ensure the educational relevance of dementia training
  • improve the quality and consistency of education and training provision.

 

It sets out standards needed in dementia education and training including raising dementia awareness, knowledge and skills for those that have regular contact with people affected by dementia and knowledge and skills for those in leadership roles.

 

 

Awareness and ‘social action’

 

Progress has been made on encouraging businesses, local authorities, the wider public sector and civil society to work together to tackle discrimination through dementia friendly communities.

 

Awareness and social action has already been a phenomenal success with over 2 million people becoming Dementia Friends. Dementia awareness and understanding has continued to increase through the creation of an additional 400,000 Dementia Friends and through the launch of Black and Minority Ethnic materials for Dementia Friends.

 

People aged over 65 now account for over two-thirds of patients in general hospitals and 30% of them will have dementia. Many may be diagnosed with dementia for the first time when admitted to hospital for another reason.

 

As such, all hospitals and physicians need to be ready to manage the care of patients with dementia.

 

All staff involved in dementia care need to be informed, skilled and have enough time to care. They need to be fully involved in the “social action” for change.

 

For example:

 

  • Nurses need good quality training and education in dementia that is easy to access, practical and focuses on attitudes/approach and communication.

 

  • Speech and language therapy services should provide equal access to intervention for communication and for swallowing disorders. Early speech and language therapy intervention is crucial so that people with dementia and their carers have their needs met in a timely way.

 

  • Social work is at the heart of empowering people with positive risk taking approaches and making sure their rights are respected and supported (Department of Health, 2014). Social workers seek to build meaningful relationships with people with dementia and their family carers, making sure they remain at the heart of the decision-making process.

 

  • Occupational therapists evaluate persons with dementia to determine their strengths, impairments, and performance areas needing intervention (e.g. Schaber and Lieberman, 2010).

 

  • Likewise, physios can assess problems that restrict a person’s physical activities as well as how able they are to join in with everyday life. The physio can work with the person with dementia and their carers to encourage and promote physical activity and maintain their mobility and independence for as long as possible.

 

 

Dementia awareness and risk reduction

 

To date, there has been limited research concerning public perceptions of brain health and dementia risk reduction. For example, a national survey undertaken in Australia in 2005 found that popular beliefs about dementia risk were weakly aligned with the scientific evidence with a low level of understanding about the association between dementia and cardiovascular factors (Smith, Ali and Quach, 2015).

 

In addition, even if such links are made, such behaviour change is not always easy (O’Donnell et al., 2015).

 

Raising public awareness of how healthy lifestyle choices can reduce personal risk of developing dementia is a priority.  The “NHS Health Check” includes a mandatory dementia awareness raising component for people over the age of 65.

 

But merely providing information about the latest research via educational sessions to health professionals caring for people with dementia may be insufficient to drive change (Goodenough et al., 2016).

 

 

 

 

Exciting developments

 

Commissioners in both health and social care need support to improve their awareness of effective practice in the provision of post diagnostic care and support.

 

Individuals with dementia who may lack the mental capacity to make their own decisions have their rights enshrined in the Mental Capacity Act 2005 (MCA).  Implemented in 2007, the Mental Capacity Act (MCA) provides opportunities for assisting with planning and making decisions on others’ behalf, and may be expected to be entrenched within clinical practice. Jill Manthorpe, Kritika Samsi and Joan Rapaport (2014) conducted follow-up qualitative interviews with 15 community-based dementia nurses to detect changes and developments in views and practices of the MCA. It was striking that some participants were concerned about lack of understanding amongst other professionals and felt more public awareness was required. All providers of care need to be encouraged to make available suitable training materials to their staff.

 

The World Dementia Council has now been re-formed, with a new Chair and Vice Chair, a refreshed membership and terms of reference and a new more action-focused operating model. Improve awareness of dementia, increase the focus on risk reduction and preventative approaches and diminish the stigma associated with the disease (their work is described here https://worlddementiacouncil.org/our-work/our-vision-and-mission).

 

 

 

About this book

 

For high quality dementia care to be provided, we need a workforce that is not only knowledgeable about dementia but also skilled in the provision of care, and appreciative of its importance.

 

It is striking that other jurisdictions other than the UK have also had difficulties in effectively educating their workforce about dementia.

We hope that, whatever your personal and professional background, however little or much you know about dementia, you will find this book informative, interesting and relevant to your needs.

Please let us know what you think of our book, or how you get on.

Dr Shibley Rahman (Twitter @dr_shibley)

Prof Rob Howard ((Twitter @profrobhoward)

London, August 2017

 

Note:

“Essentials of dementia: dementia awareness for professionals and practitioners” by Shibley Rahman and Rob Howard will be published on January 21, 2018.

 

Contents

 

Foreword (Karen Dening)

Introduction (Kate Swaffer)

 

Preface

 

Chapter 1:

Dementia awareness

 

Chapter 2:

Dementia identification, assessment and diagnosis

 

Chapter 3:

Dementia risk reduction and prevention

 

Chapter 4:

Person-centred dementia care

 

Chapter 5:

Communication, interaction and behaviour in dementia care

 

Chapter 6:

Health and well-being in dementia care

 

Chapter 7:

Pharmacological interventions in dementia care

 

Chapter 8:

Living well with dementia and promoting independence

 

Chapter 9:

Families and carers as partners in dementia care

 

Chapter 10:

Equality diversity and inclusion in dementia care

 

Chapter 11:

Law, ethics and safeguarding in dementia care

 

Chapter 12:

End of life dementia

 

Chapter 13:

Research and evidence-based practice in dementia care

 

Chapter 14:

Leadership in transforming dementia care

 

Afterword

 

Bibliography

 

 

References

 

Alzheimer’s Society (2009) Counting the cost.

 

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

 

Department of Health (2014).  A manual for good social work practice. Supporting adults who have dementia.  https://www.gov.uk/government/publications/learning-resource-for-social-work-with-adults-who-have-dementia

 

Department of Health (2016) Prime Minister’s Challenge on Dementia 2020 Implementation Plan, https://www.gov.uk/government/publications/challenge-on-dementia-2020-implementation-plan

 

Goodenough B, Fleming R, Young M, Burns K, Jones C, Forbes F. Raising awareness of research evidence among health professionals delivering dementia care: Are knowledge translation workshops useful? Gerontol Geriatr Educ. 2016 Oct 24:1-15.

 

Manthorpe J, Samsi K, Rapaport J. Dementia nurses’ experience of the Mental Capacity Act 2005: a follow-up study. Dementia (London). 2014 Jan;13(1):131-43.

 

O’Donnell CA, Browne S, Pierce M, McConnachie A, Deckers K, van Boxtel MP, Manera V, Köhler S, Redmond M, Verhey FR, van den Akker M, Power K, Irving K; In-MINDD Team. Reducing dementia risk by targeting modifiable risk factors in mid-life: study protocol for the Innovative Midlife Intervention for Dementia Deterrence (In-MINDD) randomised controlled feasibility trial. Pilot Feasibility Stud. 2015 Nov 17;1:40.

 

Royal College of Nursing (2013). Dementia: Commitment to the care of people with dementia in hospital settings, https://www.rcn.org.uk/professional-development/publications/pub-004235

 

Schaber, P., Lieberman, D. (2010). Occupational therapy practice guidelines for adults with Alzheimer’s disease and related disorders. Bethesda, MD: AOTA Press.

 

Smith BJ, Ali S, Quach H. The motivation and actions of Australians concerning brain health and dementia risk reduction. Health Promot J Austr. 2015 Aug;26(2):115-21.

 

World Health Organisation. (2012). Dementia: A public health priority. Geneva, Switzerland: WHO Press.

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