Life at Home for People with a Dementia

Ruth Bartlett, Tula Brannelly

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351619691
• Edition: 1
• Topic: Médecine
• Subtopic: Santé publique, administration et soins

Life at Home for People with a Dementia provides an evidence-based and readable account of improving life at home for people with a dementia and their families. There are estimated to be 47 million people with a dementia worldwide, the majority of whom will live, or want to live, in their own home. Yet there is a major shortcoming in available knowledge on what life is like for people with a dementia living at home. Most research focuses on care in hospitals or care homes, and takes a medical perspective. This book bridges this gap in knowledge by providing a comprehensive and critical overview of the best available evidence on enabling people with a dementia to live well at home from the viewpoint of those living with the condition, and in the context of global policy drivers on ageing and health, as well as technological advances.

The book includes chapters on citizenships – that is, the diversity of people living with a dementia – enabling life at home, rethinking self-management, the ethics and care of people with a dementia at home, technological care and citizenship, and sharing responsibilities. It concludes with a care manifesto in which we set out a vision for improving life at home for people with a dementia that covers the areas of professional practice, education and care research.

By covering a wide range of interrelated topics to advance understanding and practice as to how people with a dementia from diverse backgrounds can be supported to live well at home, this book provides a synthesised, critical and readable understanding of the complexities and risks involved.

1

INTRODUCTION

Life at home for people with a dementia is under the spotlight. More attention is being paid to improving life at home for individuals and families living with a dementia than ever before. One of the main reasons for this is because dementia is having a major impact on households, communities and countries across the world. Dementia, including Alzheimer’s disease, is one of the biggest global public health challenges facing our generation. Today, over 35 million people worldwide live with the condition, and this number is expected to double by 2030 and more than triple by 2050 to 115 million (Prince, Prina, & Guerchet, 2013). In this book, we seek to synthesise the research evidence on life at home for people with a dementia, and provide a fresh context for thinking about and researching this important subject.

To begin, we invite you to consider the following questions: what does ‘home’ mean to you? How much do you know about the day-to-day life at home for people with a dementia? Is it an area of practice and research that you are familiar with, but would like to know more about? Do you wish that more were written about the complexities and challenges of supporting people with a dementia to live at home? Do you think attitudes and expectations about life at home for people with a dementia are changing? Maybe you can imagine a future when care homes become obsolete – or at least, a less standard part of the long-term care system – because services in the community have become so well integrated and established that people with a dementia no longer need to move into a care home. Maybe you cannot understand why care homes are the norm in some countries but not others.

What risks do you to take when it comes to supporting someone with a dementia to live independently at home? Do you wish you could take more risks? What does independence and interdependence at home mean for someone with a dementia? Self-management – that is, taking responsibility for one’s own health and well-being – has become a popular principle in care discourse, but is self-management a sustainable and realistic option for a person with a dementia? How can the responsibilities of care and social citizenship be shared? Who should share such responsibilities, and can they ever be completely shared? What are the ethics of sharing responsibilities? What role do technologies have in delivering care and upholding citizenship? Perhaps you envision a world in which the very latest technologies are seamlessly integrated into people’s lives? Maybe you have concerns about the ethics and legalities of using certain technologies to support people with a dementia.

How much do you know about the friendships and support networks between people with a dementia and their families? How important do you believe these are for health and well-being and quality of life? Are they essential if a person with a dementia wants to stay at home? What about bodies and the material space people occupy? How much consideration should be given to these matters when decisions are being made about where a person with a dementia lives?

What does it mean to be a ‘good citizen’ in the 21st century when you have a dementia and are faced with cognitive and sensory challenges? How much say does a person with a dementia have in decisions about their life? How much control does a person have? How much influence and control is it possible to have when you have a dementia? How seriously do you take someone with a dementia? What support do you think people with a dementia need to stay in control? What power do people with a dementia have? How can it be increased? Do you hope for a future when the wishes of people with a dementia are not only listened to but acted upon? Do you wish that people with a dementia had more access to justice?

These are the kind of questions and topics dealt with this in this text. The idea is to start reimagining and reframing life at home for people with a dementia, by reflecting on your responses to these questions. You may have found some questions more challenging than others. Equally some questions may have prompted you to come up with your own. By asking questions it is possible to forge a new meaning about life at home for people with a dementia.

Life at home for people with a dementia

This book is about life at home for people with a dementia and their families in the 21st century. It seeks to provide clarity and a synthesised account of what we know about people with a dementia living in their own homes in the context of discourses of care and citizenship. Discourses of care are essentially about interpersonal relationships while discourses of citizenship are concerned with social justice, which we define as being treated fairly by societal institutions. Drawing simultaneously on these two discourses, we will review and discuss what is known about improving life for men and women with a dementia. The gendered nature of providing and receiving care is a recurring theme. The book is primarily for students, social workers, health care professionals, community workers, researchers, advocates and others interested in enabling people with a dementia to live well at home, including individuals and families living with this condition.

Citizenship is a sensitising concept. It reminds us that people with a dementia are not only ‘patients with needs’ but persons with a right to experience freedom from discrimination and despair and be regarded as equal members of the socio-political sphere to which they have belonged all their life. Now with the disease, they are still members of and still belong, but in different ways and with different hopes and desires.

The book expands on the understanding people have of life at home for people with a dementia. It prioritises the perspective of people living with a dementia, whilst taking account of the needs and opinions of those around them, including family members and practitioners. Our discussion is based on scholarship from a wide range of disciplines, including citizenship and disability studies, particularly work by feminist scholars, as well as the literature on dementia care, ethics of care, cultural meanings of home, and gerontechnology. Research on the design and use of technologies for independent living and social participation of older people – gerontechnology – is growing and changing the nature of care at home for people with a dementia. Hence, it is timely and important to draw upon this work in this text. The sociological literature on personal lives and family practices is marshalled to provide a normative framework for exploring life at home for people with a dementia. Our intention is to use emancipatory concepts to reframe life at home for people with a dementia.

Our motivation for writing this book is to provide a systematic focus on improving life at home for people living with a dementia. In particular, we want to explore meanings of care and social citizenship to people in this situation. Drawing on the latest research, including our own, we argue that people living with a dementia are entitled to live at home – even those individuals with complex care needs who may require round-the-clock support. It is our view that all citizens are entitled to live at home rather than be institutionalised. That is not to say everyone with a dementia should live at home, but that people have a right to expect effective measures to be taken to enable them to do so if that is what they wish. We hope this book becomes part of a wider rallying call to move away from the over-development of residential care, towards the deinstitutionalisation of people with a dementia.

In many countries, when life at home becomes too challenging, placement in a nursing home is seen as the answer (Björnsdóttir, Ceci, & Purkis, 2015). The institutionalisation rate of people with a dementia is higher than any other group in society. One systematic review found that it increased from almost 20% in the first year after diagnosis of dementia to around 50% after five years and up to 90% after eight years; in fact, the risk of nursing home placement increased fivefold for people with a dementia compared to people without a dementia (Luppa, Luck, Brähler, König, & Riedel-Heller, 2008). This is neither sustainable nor fair, especially as institutionalisation is associated with increased mortality, restricted quality of life as well as questionable quality of care (Luppa et al., 2009). Nevertheless, institutional care for older people with high care needs remains the cultural norm in most Western societies.

Take, for example, the UK. At the time of writing, a population-based study was reported and the conclusion drawn by the research team is a telling one. The UK-based researchers found that between 1991 and 2011, life expectancy increased in Britain by more than four years for both men and women, to 82.6 and 85.6 respectively. But the number of those years spent with substantial care needs rose much more rapidly, from 1.1 to 2.4 for men and 1.6 to three for women (Kingston et al., 2017). The researchers predicted that by 2025 there will be another 350,000 people in Britain with high care needs. What is striking about this piece is the conclusion drawn at the end, which is that ‘further population ageing will require an extra 71215 care home places by 2025’ (Kingston et al., 2017). Such forecasting is designed to help with future funding decisions. Nonetheless, it shows how acceptable it is (in the West) to propose more communal care for people with ‘high care needs’, as opposed to improving community-based services. This is in stark contrast to disability studies where deinstitutionalisation messages are ongoing and remain strong (Kelly, 2016).

Another motivation for writing this book, then, is to help reverse the trend towards the over-development of residential care, towards the deinstitutionalisation of people with a dementia. Deinstitutionalisation – that is, the development of community-based services as an alternative for care provided in institutional settings – has become the hallmark strategy of social and care services for individuals with limited autonomy across European countries (Ilinca, Leichsenring, & Rodrigues, 2015). People with a dementia have the right to choose their place of residence and have access to a range of in-home services, including personal assistance necessary to support independent living in the community (Article 19 of the Convention of Rights of Persons with a Disability). Moreover, the care home industry is facing a funding crisis, and so more community-based options need to be available. We hope this book becomes a part of this wider social justice agenda, by providing the language and information that individuals and organisations need to promote care at home.

To compile the book, we spoke directly to various people with experience of life at home with a dementia to bring the work alive. We visited people with a dementia and their family members in their own homes to share and talk about what we were planning to write and to ascertain whether there were any particular topics we should cover. One topic which we had not planned to discuss in this book but have done so because of this process is genetic testing and counselling. We also solicited the views and opinions of family members via email and telephone interviews. Throughout this process, we endeavoured to make it clear to people that we were attempting to assemble relevant information about making life at home liveable for people with a dementia and their family carers. Our mission, therefore, is a pedagogic one, as well as transformative.

We also watched and/or listened to some of the accounts of people living with a dementia, which are publicly available on the internet. An increasing number of men and women with a dementia are using social media platforms to express themselves; many of these individuals (although not all) live at home. Take, for example, Peter Berry who has Alzheimer’s disease. Peter began a weekly vlog in June 2017, which at the time of writing this text he was posting on YouTube and tweeting a link to his vlog every Friday from @PeterBe1130. Others are making the most of the new opportunities available designed to ‘give voice’ to people with a dementia, including, for example, Dementia Diaries (see Box 1.1). These perspectives can help us to understand what life is like for people with a dementia living at home. In particular, they show how new mobile technologies have the potential to improve disability citizenship in the 21st century (Darcy, Maxwell, & Green, 2017).

BOX 1.1 DEMENTIA DIARIES

Dementia Diaries is a UK-wide project that brings together people’s diverse experiences of living with a dementia as a series of audio diaries. It serves as a public record and a personal archive that documents the views, reflections and day-to-day lives of people living with a dementia, with the aim of prompting dialogue and changing attitudes. The Dementia Diaries initiative was designed by the non-profit communications agency On Our Radar (www.onourradar.org). It was launched by On Our Radar in January 2015 in partnership with Innovations in Dementia, Ownfone and Comic Relief, and was handed over to Innovations in Dementia in August 2016. Phase two of the project is funded jointly by Comic Relief and BIG Lottery Fund.

As well as gleaning the views of people with experience, we undertook an extensive search of databases and ‘sweep’ of the internet to locate relevant and up-to-date information about life at home for people with a dementia. A librarian was commissioned to search research databases using search terms derived from the book proposal and chapter outlines, such as ‘dementia’, ‘home’, ‘home care’, ‘law’, ‘ethics’, ‘technology’ and ‘citizenship’. The search was conducted in February 2017 and the 120+ journal articles that were found were organised according to chapter headings. Articles included the results of systematic reviews as well as surveys and exploratory qualitative studies. Searching the internet identified a number of highly relevant reports published by charitable organisations (e.g. Alzheimer’s Society, Alzheimer’s Disease International and Alzheimer’s Europe) and research funders (e.g. the National Institute for Health Research and the Economic and Social Research Council). In this book, we draw upon and discuss much of this work to show that there is a wealth of empirical knowledge on improving life at home for people with a dementia.

A particularly rich source of data for this book is a research project we have both been directly involved in – Bartlett as the Principal Investigator and Brannelly as the Project Manager. The aim of the research was to examine the usage and effectiveness of GPS ‘location’ technologies to promote safer walking from the perspective of people with a dementia, family carers and the police, through a process of participative inquiry – that is, knowledge production based on equitable research relations. The work started in November 2015 and was completed in February 2018; it was funded by the Alzheimer’s Society. The project consisted of two sequential phases of data collection, followed by a third co-production phase. Phase one involved focus groups with the police (n=20) and individual interviews with people with a dementia (n=16) and family members (n=16). Phase two employed go-along walking interviews with people with a dementia (n=15) who were using some form of technology, such as a GPS device or phone app, when they went out. The third phase involved an overnight residency with key stakeholders including research participants – the aim of which was to share preliminary findings and co-produce key messages for policymakers. The research was conducted in the south of England and covered urban, semi-urban and rural areas. All the participants with a dementia were living in their own homes. We plan to publish the findings of this research elsewhere; our intention here is to use data from what we will refer to hereon as ‘The Safer Walking GPS Project’ to illustrate various points about ethics, collaboration and sharing responsibilities. Essentially, it is another way of foregrounding the perspective of people with a dementia.

Finally, as well as drawing on published research studies, we searched the British Library for PhD theses deposited in 2016 and 2017 that related to life at home for people with a dementia. We did this to ensure that our discussion included the thinking of emerging (as well as established) scholars in the field of dementia studies. This body of work is encouraging, as it suggests that the perspective of people with a dementia, particularly younger people with a dementia, is beginning to take centre stage. No doubt other countries have a national repository of PhD theses which we could have searched and perhaps discovered even more work, or a different picture. Nevertheless, the British Library was our initial and only source for this book.

There are three major conceptual threads running through the text. The first is the noti...