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 There’s No Place Like Home:
Place and Care in an Ageing Society
 Geographies of Health
Series Editors
Allison Williams, Associate Professor, School of Geography and Earth
Sciences, McMaster University, Canada
Susan Elliott, Dean of the Faculty of Social Sciences,
McMaster University, Canada

There is growing interest in the geographies of health and a continued interest in

what has more traditionally been labeled medical geography. The traditional focus
of ‘medical geography’ on areas such as disease ecology, health service provision
and disease mapping (all of which continue to reflect a mainly quantitative
approach to inquiry) has evolved to a focus on a broader, theoretically informed
epistemology of health geographies in an expanded international reach. As a result,
we now find this subdiscipline characterized by a strongly theoretically-informed
research agenda, embracing a range of methods (quantitative; qualitative and the
integration of the two) of inquiry concerned with questions of: risk; representation
and meaning; inequality and power; culture and difference, among others. Health
mapping and modeling, has simultaneously been strengthened by the technical
advances made in multilevel modeling, advanced spatial analytic methods and
GIS, while further engaging in questions related to health inequalities, population
health and environmental degradation.

This series publishes superior quality research monographs and edited collections
representing contemporary applications in the field; this encompasses original
research as well as advances in methods, techniques and theories. The Geographies
of Health series will capture the interest of a broad body of scholars, within the
social sciences, the health sciences and beyond.

Also in the series

Therapeutic Landscapes
Edited by Allison Williams
ISBN 978 0 7546 7099 5

Sense of Place, Health and Quality of Life

Edited by John Eyles and Allison Williams
ISBN 978 0 7546 7332 3

Primary Health Care: People, Practice, Place

Edited by Valorie A. Crooks and Gavin J. Andrews
ISBN 978 0 7546 7247 0
There’s No Place Like Home:
Place and Care in an
Ageing Society

Christine Milligan
Lancaster University, UK
© Christine Milligan 2009

All rights reserved. No part of this publication may be reproduced, stored in a retrieval
system or transmitted in any form or by any means, electronic, mechanical, photocopying,
recording or otherwise without the prior permission of the publisher.

Christine Milligan has asserted her right under the Copyright, Designs and Patents Act,
1988, to be identified as the author of this work.

Published by
Ashgate Publishing Limited Ashgate Publishing Company
Wey Court East Suite 420
Union Road 101 Cherry Street
Farnham Burlington
Surrey, GU9 7PT VT 05401-4405
England USA
www.ashgate.com

British Library Cataloguing in Publication Data

Milligan, Christine, Dr.
There’s no place like home : place and care in an ageing
society. -- (Geographies of health)
1. Older people with disabilities--Care--Cross-cultural
studies. 2. Older people with disabilities--Home care.
3. Older people with disabilities--Institutional care.
4. Caregivers--Great Britain--Case studies. 5. Caregivers--
New Zealand--Case studies. 6. Medical personnel-caregiver
relationships.
I. Title II. Series
362.4'048'0846-dc22

Library of Congress Cataloging-in-Publication Data

Milligan, Christine, Dr.
There’s no place like home : place and care in an ageing society / by
Christine Milligan.
p. cm. -- (Ashgate’s Geographies of health series)
Includes bibliographical references and index.
ISBN 978-0-7546-7423-8 -- ISBN 978-0-7546-9048-1 (ebk.) 1.
Social work with older people. 2. Older people--Care. I. Title.
HV1451.M555 2009
362.6--dc22
 2009020355
ISBN 978 0 7546 7423 8 (hbk)
ISBN 978 0 7546 9048 1 (ebk.V)
 Contents

List of Figures and Tables   vii

Preface   ix

1 Introduction   1

2 Conceptualising the Complex Landscapes of Care   9

3 Who Cares? People, Place and Gender   27

4 Mapping the Contours of Care – International and Transnational

Perspectives   43

5 Care and Home   61

6 The Impact of New Care Technologies on Home and Care   77

7 Care and Community?   91

8 Care and Transition – From Community to Residential Care   101

9 Emotion and the Socio-spatial Mediation of Care   119

10 Reconfiguring the Landscape of Care: Porosity,

Integration and Extitution   133

11 Concluding Commentary   147

Bibliography   149
Index   171
This page has been left blank intentionally
 List of Figures and Tables

Figure

3.1 Care by ethnic group and time spent caring in the UK (2001) 39

Tables

2.1 Construction of informal care within differing welfare regimes 15

2.2 Unpacking the concept of care 16
9.1 Health symptoms felt by informal carers in Great Britain
by number of hours spent caring (2000-2001) 121
This page has been left blank intentionally
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 Preface

At age 84, my father-in-law was diagnosed with dementia, he was a non-smoker

who drank alcohol only sparingly at celebratory and other ‘special’ social events.
The onset of his dementia followed closely on the heels of medical surgery. Until
that time he had lead a fit and active life and would often pass the time doing
woodwork in his garden shed or helping out a friend or neighbour. On more than
one occasion he could be found chopping wood for the ‘old chap’ who lived further
along the road he lived in. My mother-in-law was 82 at the time; she had (and still
has) partial hearing and a long-standing and incurable sight impairment. Despite
these physical impairments, she was a fit and active woman who undertook the
main caring role during the two years of my father-in-law’s dementia – all but
the last six months of which took place in their own home. She was regularly
supported in this caring role by two of her non-resident adult children until my
father-in-law’s health deteriorated to the extent that a 24 hour nursing home care
became the only realistic solution. My husband, despite being a non-resident carer,
took a significant role in caring for his father, fulfilling many of the intimate caring
and personal hygiene tasks that more commonly fall to female family members.
Support from the formal care services at that time can, at best, be described
as disorganised and chaotic. Some services were put in place whether required or
not and others that were needed were not available. Despite numerous phone calls
to cancel deliveries of incontinence pads, for example, they continued to arrive
on a weekly basis. At one point, the spare bedroom in my mother-in-law’s home
was piled from floor to ceiling with boxes of these pads. While incontinence is
no laughing matter, my father-in-law was at least guaranteed to remain clean and
dry! While it is possible to see some humour in this situation, my later research
revealed that in other areas, those who desperately needed these resources had to
do without, creating distress and humiliation for all concerned. ‘Tuck in’ services
aimed at helping my mother-in-law to get her husband ready and lifted into bed
arrived at 7.00 p.m. at night leaving her with the unenviable task of trying to
keep her husband from trying to climb back out of bed when no help was readily
available to get him back into it. New paid care workers would arrive at the house
with absolutely no formal training in either basic hygiene or care techniques. In
one instance a care worker was found attempting to empty the contents of the
commode down the kitchen sink. We began keeping a diary of events and in one
month, we noted that over seventeen different paid care workers arrived on my
mother-in-law’s doorstep. Her confusion became so extreme, that on one occasion
she showed a (rather confused) woman collecting for charity into my father-in-
law’s downstairs bedroom, thinking she was yet another in a long line of care
 There’s No Place Like Home: Place and Care in an Ageing Society

workers. Her distress about the quality of care services lead us to contact an NHS
arbitrator, whose role was to negotiate with these services in an attempt to bring
order to the apparent chaos of care delivery.
This, of course, is an extreme example and my mother-in-law was not without
family support. Yet, my later research revealed that such experiences are not
uncommon.
Two years after the death of my father-in-law, my widowed mother was
diagnosed with Alzheimer’s disease. I have lived proximate to my mother for
nearly 30 years and with two daughters, the primary caring role fell to both myself
and my sister. My mother suffered from an accelerated form of Alzheimer’s and
died just over a year from diagnosis. The restless and aggressive nature of the early
stage of her illness lead to several extremely concerning incidents in which she
disappeared from her home for short periods of time, leaving my sister and myself
frantic with worry. On one occasion she walked onto a train and turned up in a city
some 70 miles away with no recollection of how she got there, or how she could
get home. Our concern was such that we took clinical advice and agreed to place
my mother in the dementia wing of a psychiatric hospital for a six-week period of
assessment. I can only describe this place as truly awful. Whilst architecturally the
setting was wonderful, the staff attended only to the personal and medical needs
of the patients, there was no attempt at therapy or occupational activity. Those in
for assessment were placed in a locked (and mixed) ward, with no locks on the
bedroom doors. The restless nature of the dementia suffered by some of those in
the ward meant that they regularly wandered in and out of their fellow patients
rooms, opening doors and cupboards and taking their belongings. Staff in the unit
appeared to have little comprehension of the extent of distress this caused both
patients and their families. On one occasion my mother was attacked by a fellow
patient, on another occasion, a fellow (male) patient lay screaming across the
doorway to her bedroom. My mother refused to go to the communal bathroom in
the night for fear she would meet one of these patients. She was continent on entry
to the hospital ward and almost fully incontinent on leaving the place six weeks
later. Don’t get me wrong, I am sure that by the very nature of my mother’s illness
she is likely to have been responsible for a share of the disruptive behaviour in the
ward. But I remain convinced that much of the distress could have been avoided
had the hospital ensured that in-patients were able to enjoy a modicum of privacy
and that some activities or occupational therapy were available. It was clear at the
end of her period of assessment that my mother’s mental health had deteriorated
to such an extent that we would be unable to care for her at home.
Following much distress and soul-searching my sister and I took the advice of
the medical and social work staff assigned to my mother’s case and placed her care
in the hands of staff in a residential care home specialising in dementia.
The care home we ‘chose’ for my mother had many good things to recommend
it. It was relatively small in comparison to some of the ‘chain’ care homes in the
area, its staff-to-patient-ratio was much lower than that of many other nursing
homes and many of the paid care staff were warm, caring people. But we
 Preface xi

experienced many frustrations as well. Claims were made about activities and
treatment prior to my mother’s entry to the care home that were never delivered
in practice. Privacy, though considerably better than the assessment ward in the
psychiatric hospital, was still limited. Conflict and confusion arose over decision-
making and medication. We of course are not unique, many others share similar
experiences, but all of this is extremely wearing on informal carers. Contrary to the
expectation that placement in a care home would relieve my sister and I of some
of the stresses of caring, we, in fact, found ourselves facing new and unexpected
stressful experiences.
You might be forgiven for thinking that the experiences recounted above
occurred around the 1950s or 1960s – after all, it was the work of Goffman and
Townsend that first drew our attention to the dire circumstances experienced by
many of our disturbed and frail older populations. In fact, the above account of
my mother’s experience occurred between January 2000 and February 2001 – my
father-in-law’s experience occurred only two years earlier.
Yet these experiences have not all been bad – I have the highest regard for the
social worker assigned to my mother’s case – she steered us through the confusing
maze surrounding care services in the UK, her support was unfailing during
periods of bewilderment and disillusionment in relation to my mother’s residential
care. Many of the care workers in the care home were wonderfully kind and caring
people, as was one of the clinical ward managers. In my view, the remuneration
they receive for this work is poor in comparison to the often stressful and difficult
tasks they undertake.
Nevertheless, it was the experiences of care during the periods of both my
mother’s and father-in-law’s illness that drew my attention to the apparent disorder
and disparities in the system. In the case of my father-in-law, I was more of an
onlooker – giving practical support where needed, helping to complete forms and
dealing with the formal care services, but with two sons and a daughter living
in the same town, my mother-in-law was one of the ‘lucky’ carers, in that she
did not lack for close familial support. In the case of my mother, I experienced
these things first-hand. More than seven years on from my mother’s death, I still
question a system whose legislation pays homage to human rights and dignity,
but whose practical application can at times leave much to be desired. Were we
unlucky in the services we received or were our experiences ‘the norm’? Carers
are often so physically and emotionally drained, that summoning the additional
energy required to protest about unsatisfactory services may be beyond them. How
are informal carers included (or excluded) in decisions made about around care
services in the home and in residential care? Where does power and control really
lie? How can examples of good practice be identified and replicated? These are all
questions that underpin the work on which this book is based.

Christine Milligan
March 2009
For Norman
 Chapter 1
Introduction

Care for frail older people often involves not just one story or narrative, but several,
each evolving over time and space.

Despite the increased interest in informal care in recent decades, the concept itself
is not new. The UK for example, as with many advanced capitalist countries, has
long had a mixed economy of care in which the state, the family, the voluntary
sector and the market are seen to play different roles at different times. Indeed,
Offer (1999) went so far as to claim that the ‘classic welfare state’ (as epitomised
by Britain between 1945 and 1976) should be seen as exceptional rather than a
culmination of earlier ideas and practices. Rather than a recent ‘discovery’, then,
the ‘re-discovery’ of informal care by political and academic communities –
particularly since the late 1970s – has emerged at a time when idealist conceptions
about the nature of ‘real welfare’ have been discarded.
Three significant factors have contributed to the raising of state and professional
interest in informal care, particularly within advanced capitalist societies. First,
global ageing – whilst this is a worldwide phenomena, many advanced capitalist
states are seeing a particular growth in the 75+ age groups. Indeed, recent figures
from the UK Office of National Statistics reveal that for the first time ever the
country has more pensioners (defined as those aged 65+) than under-16s (ONS
2008). Whilst many older people do not require care, it is nevertheless true that
advancing age increases the likelihood of frailty and hence the potential need
for care and support (Williams and Cooper 2008). Second, within many neo-
liberalising states there has been a widespread erosion of public sector support
services over the last two decades or so in favour of a mixed economy of care. This
includes an elevated role for the private and third sectors, underpinned by attempts
to reinvigorate ‘responsible citizenship’. If we accept Offer’s interpretation of the
rise of the welfare state, such shifts in care can be seen as a return to the prevailing
status quo. Both of the issues referred to above should be interpreted alongside a
third shift – an ideological turn towards ‘ageing in place’. This shift has taken root
in many advanced capitalist states over the latter half of the twentieth century. It
has been underpinned by policies and supports designed to enable older people to
remain in their own homes as long as possible, with the aim of reducing the need
for residential care. In sum these three factors have contributed to an increasing
shift in health and welfare policies and practices in neo-liberal states away from
state dependency models of provision in favour of personal and family reliance.
Inherent within this shift are assumptions not just about the nature of the family
in contemporary society, but also its willingness, and capacity, to assume caring
 There’s No Place Like Home: Place and Care in an Ageing Society

responsibilities. These changes are of particular significance for the long-term care
of older people in an ageing society,
While policy and legislation in many neoliberalising countries acknowledges
that there is still a role for statutory and independent bodies in supporting older
people to ‘age in place’, in reality, where care support in the home is required, most
is undertaken by family, friends and neighbours. Such care is largely unpaid and
can involve a wide variety of tasks ranging from shopping and the management
of financial matters to personal care and medication. Within this book such care
is referred to as informal care as distinct from formal care consisting of paid care
work undertaken by a range of health and social care professionals drawn from
the statutory, voluntary and private sectors. In the UK, as many as one in eight
people are now seen to undertake informal (or family) care, looking after someone
who is sick, elderly or disabled (Department of Health 2008) – nearly five million
of these people care for someone who is over the age of 65 (Maher and Green
2002). Some five years ago, the UK carers’ charity Crossroads estimated that the
overall saving to government and taxpayers was around £57 billion per year (BBC
News 2003). In the United States, it has been estimated that around one in six
households (around 35 million people) provide unpaid care for an adult over the
age of 50 – mostly to parents or grandparents (National Alliance for Caregiving
2006). Increasing numbers of caring households are also evident in such countries
as Australia, Canada and New Zealand. Clearly, then, informal care within the
home is a key component of policy around care for older people and, as such, is
crucial to its successful implementation.
Few would argue that state provision could ever replace that provided by
informal caregivers. Indeed, Hirst (2002) maintained that most community
health and social care services would be unable to cope without the contribution
of informal carers – a comment echoed by ter Meulen and van der Made (2000
p. 257) who maintained that, ‘Informal care not only supplements professional
care, but is a basic conditioning for the functioning of the organised health care
system’. Commenting on the extent of informal care-giving in the UK revealed
by the 2001 Census, the then Liberal Democrat spokesman for older people, Paul
Burstow, went as far as to claim that informal carers are the foundation upon
which the whole care system stands, without them, the whole system would face
collapse and many voluntary organisations would struggle (BBC News 2003).
Supporting informal carers is thus high on the public policy agendas of many
advanced capitalist countries.
However, in conjunction with this recognition that informal carers are critical
to the success of policies designed to support ‘ageing in place’, there has been a
growing acknowledgement that the heavy demands of care-giving can lead to a
decline in the physical and mental health of informal carers themselves (O’Reilly
et al. 2008). One consequence of this has been that in countries such as the UK,
Canada and New Zealand, governments have introduced a raft of strategies,
guidance and legislation designed to support informal carers. This not only places
them at the centre of future health and social care strategies, but in the UK at
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