Making sense of dementia. A phenomenographic study of the information behaviours of people diagnosed with dementia
| Published date | 15 May 2017 |
| Pages | 261-277 |
| DOI | https://doi.org/10.1108/AJIM-08-2016-0141 |
| Date | 15 May 2017 |
| Author | Juliet Harland,Peter A. Bath,Ann Wainwright,Jeremy Seymour |
| Subject Matter | Library & information science,Information behaviour & retrieval,Information & knowledge management,Information management & governance,Information management |
Making sense of dementia
A phenomenographic study of the information
behaviours of people diagnosed with dementia
Juliet Harland and Peter A. Bath
Information School, University of Sheffield, Sheffield, UK
Ann Wainwright
Sheffield Health and Social Care NHS Foundation Trust, Sheffield, UK, and
Jeremy Seymour
Rotherham NHS Foundation Trust, Rotherham, UK
Abstract
Purpose –The purpose of this paper is to investigate the information behaviours of patients newly
diagnosed with dementia.
Design/methodology/approach –This is a cross-sectional qualitative study, using in-depth interviews
with 13 people recently diagnosed with dementia.
Findings –Reactions to a diagnosis of dementia varied and these influenced the perception of the value of
information when making sense of the diagnosis. Information was avoided if participants did not feel that
they could influence their situation; instead, participants relied on internal explanations to normalise their
memory loss. Barriers to information seeking and use included not knowing who to speak to, perceived
stigma associated with dementia and difficulty of applying generic information to own situation.
Some participants valued information that confirmed their suspicions and provided explanations.
Research limitations/implications –This study was based on a small sample size (n¼13), the findings
may not be generalisable to all people with dementia; however, the findings may be transferable to people
who have recently been diagnosed with dementia.
Practical implications –There is not a one-size-fits-all approach to information provision for people with
dementia at diagnosis, information should be tailored to individuals.
Social implications –There is a need to address the feeling of powerlessness and futility that some people
with dementia experience at diagnosis, as this precludes independent information seeking and use.
People receiving a diagnosis may need additional support and information pertinent to their specific
circumstances, separate from the information needs of their carer(s).
Originality/value –The study provides a new understanding of the information behaviours of people
recently diagnosed with dementia and how these differ from those of informal carers.
Keywords Information, Dementia, Phenomenography, Diagnosis, Behaviour, Need
Paper type Research paper
Introduction
Dementia
With the increasing ageing population, the numbers and proportions of people with age-related
health conditions, such as dementia, will increase over the next 30 years. Dementias are a range
of conditions caused by chemical and pathological changes in the brain, due to underlying
neurodegenerative diseases (McKeith and Fairburn, 2001). The symptoms of dementia include
memory loss, cognitive decline, confusion, difficulties with problem solving, reasoning and
communication, impaired ability to cope with activities of everyday life, such as personal
hygiene and cooking, and changes in personality or behaviour (Knapp and Prince, 2007).
Dementia is often associated with old age, affecting one in six people over the age of 80 and one
in 14 people over the age of 65 (Knapp and Prince, 2007). Aslib Journal of Information
Management
Vol. 69 No. 3, 2017
pp. 261-277
© Emerald PublishingLimited
2050-3806
DOI 10.1108/AJIM-08-2016-0141
Received 26 August 2016
Revised 31 March 2017
Accepted 10 April 2017
The current issue and full text archive of this journal is available on Emerald Insight at:
www.emeraldinsight.com/2050-3806.htm
The authors would like to thank the Arts and Humanities Research Council, who funded the study.
The authors also thank the participants who kindly agreed to take part in the research and also
thank the threeanonymous reviewers whosehelpful comments helpedthe authors to improve the paper.
261
Making sense
of dementia
Dementia is caused by neurodegenerative diseases that progressively damage and
destroy brain cells; however, the different types of dementia lead to different patterns of
brain damage, which therefore have different symptoms and affect people in different ways
(Arendt and Jones, 1992). The most common form of dementia is Alzheimer’s disease (AD),
which accounts for 50-75 per cent of cases of dementia (McKeith and Fairburn, 2001):
this is characterised by development of plaques in the white matter of the brain. In contrast,
vascular dementia (VaD) is caused by strokes that restrict the brain’s oxygen supply;
it is estimated that this accounts for approximately 25 per cent of dementias
(McKeith and Fairburn, 2001). Other causes of dementia include dementia with Lewy bodies,
fronto-temporal dementia, Parkinson’s disease, Huntington’s disease and Creutzfeldt-Jakob
disease (National Institute for Health and Clinical Excellence, 2006).
World-wide, there are an estimated 24.3 million people with dementia: it is predicted that
there will be 4.6 million new cases of dementia every year (Ferri et al., 2005). The incidence
of dementia is also predicted to almost double every 20 years, to 42.3 million in 2020 and
81.1 million in 2040 (Ferri et al., 2005). In the UK, the numbers and proportions of older people are
increasing and are predicted to do so until at least 2033 (Office for National Statistics, 2009).
There are approximately 820,000 people with dementia in the UK, which have been estimated to
cost the UK economy £23 billion per annum (Luengo-Fernandez et al., 2010). It is predicted that
this will increase to one million people by 2025 and 1.7 million by 2051 (Knapp and Prince, 2007).
Dementia is therefore a growing health issue, not least because of the mounting economic
cost of dementia and the increased pressure on health and social care services. At a personal
level, there are health, social and economic impacts on people who have dementia and their
family members and friends, who often act as informal and unpaid carers (Schulz et al., 1995;
Comas-Herrera et al., 2003; Knapp and Prince, 2007). The National Institute for Health and
Clinical Excellence (2006) guideline on dementia emphasised the importance of recognising
and meeting the needs of informal carers a priority.
In 2009, the UK Department of Health published its National Dementia Strategy. One of the
aims of this strategy was to establish a memory clinic in every town to aid the diagnosis and
management of dementia by creating a central hu b through which the provision of services
and information could be co-ordinated (Department of Health, 2009). Providing good quality
information for people with dementia and their carers was highlighted as a priority.
Information needs and information behaviours
Information about dementia, concerning the diagnosis, prognosis and the help and support
available can come from many sources, including verbal and written explanations given by
health professionals (Mastwyk et al., 2014), diagnostic information sheets, information leaflets
from the Alzheimer’s Society, as well as informal sources of information, such as family and
friends and, increasingly, the media. Understanding if, and how, people with dementia need,
seek and use these different types of informationisimportant,asresearchhasshownthatmany
people with dementia want to be fully informed about their diagnosis (Pinner and Bouman,
2003a, b; Beattie et al., 2004; Harman and Clare, 2006), although others may prefer not to know
(Corner and Bond, 2004). Although some research has specifically focussed on the information
needs of carers of people with dementia (Thompsell and Lovestone, 2002; Wackerbath and
Johnson, 2002; Wald et al., 2003; Robinson et al., 2009), limited empirical data have been gathered
about the information needs and behaviours of the person with dementia (Mastwyk et al., 2014;
Lecouturier et al., 2008). It is important to develop a better understanding if support services for
people with dementia are to adopt a patient-centred approach and provide services according to
the person-centred care model of dementia treatment (Kitwood, 1997).
To enable health professionals and healthcare services to facilitate access to information
in an appropriate format and at the right time, there must be recognition that people with
dementia are a heterogeneous group, who have different needs and preferences for
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