Textbook of Dementia Care

An Integrated Approach

Graham Jackson, Debbie Tolson, Graham A Jackson, Debbie Tolson

• Publisher: Routledge
• Year: 2019
• ISBN:
  9781315389820
• Edition: 1
• Topic: Médecine
• Subtopic: Soins infirmiers en gérontologie

Textbook of Dementia Care: An Integrated Approach gives an overview of dementia care at a level appropriate to health and social care students, as well as providing an update to experienced practitioners. Authors come from a variety of backgrounds including nursing, psychiatry, medicine, psychology and allied health professions. There is a good mix of content from experienced new authors, academics and practitioners.

The book offers:

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• a comprehensive list of contributors from different disciplines

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• input from people living with dementia and their family carers

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• relevant research to inform practice

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• case examples to illustrate and inform the text.

While directed primarily at a nursing and social care readership, the book also provides a readable general text appropriate for all involved in dementia care. It is written by expert practitioners in the field, many of whom are leaders in practice-based research. It incorporates the expertise of representatives of Alzheimer Scotland, but also includes accounts of people living with dementia, families, and carers, giving the reader a unique insight into the disease.

Part I

Dementia in context

1 Introduction

Graham A. Jackson and Debbie Tolson

In the last decade public and political interest in dementia and dementia care has increased greatly. Calls for research to prevent, treat and cure dementia abound, and governments around the world have been charged with creating national dementia action plans (European Parliament 2010) and to invest in the development of the dementia workforce and to improve services (Department of Health 2013). The World Health Organisation Global Dementia Action Plan 2017 is for people with dementia and their carers to live well and receive the care and support they need to fulfil their potential to live with dignity, respect, autonomy and equality (World Health Organisation 2017). This improvement imperative is particularly welcomed by individuals, family and practitioners, many of whom have direct experience of what might be described as the inverse care law, that is to say, that those who need most care seem to receive least (Tolson et al. 2016).

To address such inequalities and to accelerate evidence informed person-centred care will require a commitment to both integrated expert led practice and integrated specialist services. This repositioning of dementia care as specialist and complex is a prerequisite for progress that calls for a greater and more nuanced understanding of the underlying cause, illness trajectory and its impact on the person’s life.

What is dementia? The definition from the World Health Organisation (Box 1.1) is widely used. As we can see it is not one condition, but a syndrome that can be caused by a number of different diseases all of which cause significant brain damage. The commonest form is Alzheimer’s disease; other common forms are vascular dementia, Lewy Body dementia and frontotemporal dementia. Other forms are much less common. We know that dementia incidence increases with age, so, as the average age of population rises, so too will the number of people with dementia.

Box 1.1 Learning point: Definition of dementia

Dementia is a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not clouded. The impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation. This syndrome occurs in Alzheimer disease, in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain.

(World Health Organisation, 1999)

However, these conditions are often not easy to separate from one another. There is a lot of overlap in how they present and indeed even brain imaging is still not accurate. At the present state of medical knowledge, it is perhaps less important to put a definitive label on the type of dementia, as there are no specific and effective treatments. Although diagnosis will help determination and anticipation of patterns of need and inform advances in more specific tailoring of caring and treatment interventions. A diagnosis of Lewy body dementia, for example, is important when prescribing medication due to potential responses to drugs both in terms of side effects and in terms of targeting specific symptoms that can be very important. For people who develop dementia earlier in life there are strong genetic factors at work, so it is important to know the nature of the dementia for planning their care and in providing their offspring with information about their own dementia risks and life choices.

Although we generally think of dementia as a condition of later life, and age is indeed a risk factor, it may start earlier in life. Various phrases are used from time to time to describe the rise in the number of people with dementia, such as the dementia epidemic, the rising tide, the ticking time bomb. But the use of these terms contributes to the stigma dementia has in society. More people with dementia in society is the result of a success story, of people living longer and remaining generally healthier. We must also remember that particularly in Western societies much of the reported rise can be explained by better and more efficient diagnostic pathways.

Writing now in 2018, no drugs have been licensed for the treatment of dementia since the late 1990s. There are a lot of potential compounds being investigated, but not available for general use. Many promising avenues of research have proved fruitless. One of the difficulties though is that we do not really understand the brain mechanisms of normal functioning, let alone why they go wrong. Failure of many promising avenues, including preventative studies, are hampered by the fact that the disease process in the brain is likely to have started several decades before the onset of symptoms.

It has been increasingly recognised that Alzheimer’s disease and vascular dementia share common risk factors with cardiovascular conditions in general including smoking, poor diet, high blood pressure, lack of exercise and family history. Changes in the incidence from stroke disease and heart attacks in Western countries are being followed by a potential drop in the expected numbers of people with dementia, emphasising the role of preventative factors.

So, in the future we may see treatments which prevent or at least ameliorate the effects of dementia. This is likely though to be a long way off, if indeed it does happen. However, the current challenge for society is one of making sure that people with dementia are able to live the best life possible throughout the various stages of illness from onset to the end of their lives.

The definition of dementia referred to above focuses on impairments, on what people are unable to do. While it is important to recognise that there is neurological damage which does affect how someone is able to manage in life, at the same time we should look to build on individual capabilities. A person’s abilities and needs will change across the continuum of their life with dementia. Dementia does not exempt a person from other health problems and illnesses, and these must be taken into account within dementia care planning, and managed appropriately. Dementia is a progressive condition that most commonly affects memory, cognition, communication and sensory experiences. It gives rise to complex physical health needs, psychosocial needs and spiritual and existential needs. Accordingly, it follows that integrated models of care, that recognise and responds to these range of evolving needs, both of the individual, and of their family, is likely to yield better outcomes than non-integrated alternatives.

As a society we must ensure that people are not stigmatised by having dementia, and recognise that people have a right to the most rewarding and fulfilling life possible by providing appropriate integrated care and support to them and their families whenever and wherever it is needed. This will only be possible with commitment, creativity and involvement of everyone from politicians, to planners, to practitioners and researchers, to designers, to people who provide care, to families and of course to people with dementia themselves.

This book is intended to help people to fulfil this aim.

References

Department of Health (2013) “G8 dementia summit agreements.” Available from: https://www.gov.uk/government/publications/g8-dementia-summit-agreements.

European Parliament (2010) “Report on a European initiative on Alzheimer’s disease and other dementias (2010/2084(INI)).” Available from: http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//NONSGML+REPORT+A7-2010-0366+0+DOC+PDF+V0//EN.

Tolson, D., Flemming, A., Hanson, E., de Abreu, W., Lillo Crespo, M., MacRae, R., Jackson, G.A., Touzery, S.H., Routasalo, P., Holmerová, I. (2016). “Achieving Prudent Dementia Care (Palliare): an international policy and practice imperative.” International Journal of Integrated Care. doi:10.5334/ijic.2497.

World Health Organisation (1999) “The International Statistical Classification of Diseases and Related Health Problems (ICD 10).” Available from: https://icd.who.int/browse10/2016/en.

World Health Organisation (2017) “WHO Global Dementia Plan.” Available from: http://apps.who.int/gb/ebwha/pdf_files/EB140/B140_28-en.pdf?ua=1.

Further reading

Ritchie, C.W., Russ, T.C., Banerjee, S., Barber, B., Boaden, A., Fox, N.C., Holmes, C., Isaacs, J.D., Leroi, I., Lovestone, S., Norton, M., O’Brien, J., Pearson, J., Perry, R., Pickett, J., Waldman, A.D., Wong, W.L., Rossor, M.N., Burns, A. (2017) “The Edinburgh Consensus: preparing for the advent of disease-modifying therapies for Alzheimer’s disease.” Alzheimer’s Research & Therapy 9(85). Available from: https://doi.org/10.1186/s13195-017-0312-4.

2 Policy perspectives

Graham A. Jackson, Debbie Tolson and Lindsay Kinnaird

Dementia has gradually over the past two decades or so been recognised as a major issue globally (Prince et al. 2013). Developments in health and social care as well as a rise in wealth across the world have led to an increase in the average lifespan. While this is most evident in the so-called western world, this is happening in most if not all countries. Particularly rapid increases in the numbers and proportion of older people are forecast for China, India, and Latin America (Sousa et al. 2010). The main risk factor for the development of dementia is of course advancing age, so an older population means many more people living with dementia.

The increasing numbers of people living with dementia combined with the economic challenges which many countries have been facing have led to predictions that care and treatment will become unaffordable if they continue to be developed and provided using current models. International developments to try to address this have included the G8 Dementia Summit in 2013, chaired by the then British Prime Minister David Cameron, and the 2015 World Health Organisation (WHO) Ministerial Conference on Global Action Against Dementia.

In 2015 Alzheimer’s Disease International released their annual World Alzheimer Report focussing on the global effects of dementia and provided estimates of the prevalence and consequences of dementia up until 2050. It suggested that almost 50 million people were living with dementia in 2015 and predicted that this would treble by 2050, with by far the biggest rises in low- and middle- income countries. While many recent studies have suggested that the rate of increase in dementia is slowing, there is no doubt that providing support will continue to be a major challenge, and absolute numbers will continue to increase significantly by virtue of the increasing older population.

Changes in the make-up of society also put an increased burden on state and self-provided support. Social mobility has led to a great decrease in what has been referred to as familial piety, that is, the dealing of problems of health and social support within one’s own networks and families. Extended families are less likely to stay near to the family home than was the case only a few decades ago, and families are increasingly fractured with the traditional model of support less likely to be available.

In the UK, the expectations we have of receiving good quality care throughout our lives has grown. No longer is the Shakespearean description of old age (from As You Like It) “Last scene of all… is second childishness and mere oblivion, sans teeth, sans eyes, sans taste, sans everything” seen as reality for ourselves. Yet we still talk in terms of the elderly as being a different group from ourselves, rather than as us when we grow older. This is partly why politicians throughout the world do not plan in terms of how to fund support. They are reactive, tending to look at the here and now only. It is difficult to feel confident of being re-elected if politicians tell people that their taxes will have to rise, or that other services will have to be cut, to fund care for “the elderly”. Yet that is what is going to have to happen.

In many health services, a good example being the UK, there is a principal that health care will be free at the point of need. While this works reasonably well when it is for emergency or short-term care, it is increasingly difficult to provide in the long term. In Scotland the government introduced free personal care for people over the age of 65 in the early part of the 21st century. This means that some aspects of personal care are funded, for all who need it, by the state. It can be argued though that this particularly benefits those with their own resources, as the state has always funded such support for those who were totally unable to afford it. Whatever the rights and wrongs, increasing numbers of people being entitled to it, and therefore the cost, means that this policy is increasingly under scrutiny.

In many countries there are insurance-based schemes to help provide care. But these too are expensive, and lead to a two-tier system of care where those on low income rely on what is often second-ra...