General practitioners' experiences and understandings of diagnosing dementia: Factors impacting on early diagnosis☆
Introduction
GPs play a central role in the provision of primary health care to elderly people and are the health professionals most often consulted by carers of people with dementia (PWD) (Downs, 1996). However, they are slow to diagnose dementia (Wilkinson, Stave, Keohane, & Vincenzo, 2004). Policy makers, carers of PWD and many health care providers view delays in diagnosing dementia with concern because early or, as it sometimes described, ‘timely’ diagnosis of dementia is currently viewed as the “precondition for improving dementia care” (Vernooij-Dassen et al., 2005, p. 377). The arguments put forward in support of the early diagnosis of dementia are that recognizing dementia in the earlier stages will allow time for carers and those affected by dementia to understand what is happening, plan for the future and establish links with support services, thus hopefully preventing crisis situations (Leifer, 2003). However, evidence suggests that 50–80% of dementia cases are missed in primary care and many cases are missed altogether, with elderly people never receiving a formal diagnosis (Boustani et al., 2005).
This article reports findings from three linked qualitative research projects that explored how Australian general practitioners (GPs) spoke about their experiences in diagnosing dementia and their views on early diagnosis and barriers towards early diagnosis. The authors conducted this research with the aim of elucidating the GP perspective and using this to better understand the process of diagnosing dementia and delays in diagnosing dementia.
Dementia is the term used to describe symptoms related to a severe loss of intellectual abilities that may include memory loss, personality change, dysphasia, agnosia and constructional difficulty. The vast majority of cases occur in older people. Over 60% of cases are attributed to Alzheimer's disease, with the remainder largely attributed to Lewy Body dementia or vascular dementia (Sloane et al., 2002).
Global prevalence estimates are that 24 million people currently have dementia and, due to ageing populations in many countries, this number will double every twenty years to 42 million by 2020 and 81 million by 2040 (Ferri et al., 2005). In the year 2000, the number of Australian dementia cases was estimated at 172,000 and this is expected to increase to 588,000 by 2050 (Jorm, Dear, & Burgess, 2005). There is no cure for dementia and as the condition advances PWD often display behaviors such as wandering, confusion, disorientation, incontinence and an inability to recognize dangerous situations or to maintain self-care (such as bathing, remembering to eat). As such, many PWD will eventually require residential care or constant supervision from a carer if they continue to live in the community.
There are two circumstances where GPs are advised to identify patients who may have dementia. The first occurs when older patients or their family members present to a GP complaining of symptoms such as decline in memory, reduced emotional control and changed social behavior, or a decline in thinking and planning. The second occurs when GPs observe ‘early pointers’ to dementia while treating older patients for other conditions. Examples of these ‘early pointers’ are forgetting appointments or medication, social withdrawal and a decline in grooming and self-care. Australian evidence based guidelines advise against routinely screening older people for dementia (NSW Department of Health, 2003).
The diagnosis of dementia in general practice is a lengthy process, necessitating longitudinal observation, because it is a complex and variable condition. Furthermore, symptoms of early dementia are less likely to be memory loss and more likely to be emotional changes and a decline in thinking and planning (Iliffe, 1997). In addition, dementia mainly affects already frail elderly people who frequently have co-morbidities. Thus, GPs often attribute symptoms of early dementia to tiredness, old age or depression (Cahill, Clark, Walsh, O'Connell, & Lawlor, 2006).
There are problems associated with the available screening instruments and shortages in specialist expertise that also make diagnosing dementia difficult. Once a GP is alerted to the possibility of dementia, there is a limited range of readily available diagnostic instruments. Many doctors are reluctant to order expensive, uncomfortable or invasive diagnostic tests for very old people (80+), particularly when the suspected condition is untreatable (Lepeleire, Heyrman, Baro, Buntix, & Lasuy, 1994). Furthermore, the screening tests commonly used by GPs, such as the Mini-Mental State Examination (MMSE), may not identify symptoms such as behavioral change and daily function problems that characterize early dementia, while more comprehensive dementia screening tests are rarely practical for use in primary care settings (Boustani et al., 2005). Following initial identification by a GP, a patient is likely to require further investigation and/or a specialist referral to exclude reversible causes of dementia symptoms and to confirm a diagnosis. However, access to geriatricians and psycho-geriatricians is limited in many countries (including Australia), particularly in rural areas (AMWAC, 1997, Teel, 2004).
Delays in diagnosing dementia are likely to also reflect two key interconnected attitudinal and knowledge related factors. The first of these is a reported lack of confidence among GPs in diagnosing early dementia and a concurrent lack of time to observe patients in order to make a firm diagnosis (Iliffe et al., 2003, Woods et al., 2003). The second factor is a feeling among many GPs that the early diagnosis of dementia is not important. This attitude is related to several issues. Perceptions among GPs that there are no effective options for the treatment of dementia, limited awareness of the benefits of diagnosis for people with dementia and their families and skepticism about the usefulness and appropriateness of dementia specific medications have all been identified (Vernooij-Dassen et al., 2005, Wilkinson et al., 2004).
Several studies show that GPs also consider that early diagnosis may actually be harmful to patients. The main concern expressed by GPs in these studies is that early diagnosis extends the period of illness while inevitably labelling a person as being afflicted with a highly stigmatized illness without a cure (Iliffe et al., 2003, Vernooij-Dassen et al., 2005). Even when GPs do consider that early diagnosis is desirable, their practice may not reflect this (van Hout, Vernooij-Dassen, Bakker, Blom, & Grol, 2000).
GPs' feelings of discomfort and conflict about diagnosing dementia are clearly apparent in their disclosure practices. GPs (more than psycho-geriatricians) find it difficult to disclose a diagnosis of dementia to a person with dementia, often choosing instead to reveal a diagnosis to a relative or carer, while informing patients themselves that they are having ‘memory problems’ or ‘getting older’ (Bamford et al., 2004).
The issue of disclosure draws attention to the role played by PWD and their family members. Like GPs, PWD and their relatives often have trouble distinguishing between normal ageing and dementia, and this may contribute to time lags between the onset of symptoms and visiting a GP (Knopman, Donohue, & Gutterman, 2000). In addition, some patients and relatives are afraid of being diagnosed with dementia and may delay visiting a doctor to consult about behavioral or memory problems, or refuse testing when it is suggested. Perhaps because of these reasons, dementia is often diagnosed in a crisis situation such as the death or incapacity of a spouse who has been acting as the ‘memory’ for the person with dementia. Similarly, PWD living in a supported situation are able to continue living relatively normally for longer because those around them are able to cover for them, assist them with tasks and so on. They are thus less likely to be diagnosed with dementia (Iliffe & Manthorpe, 2004).
However, some research suggests that early diagnosis is the preferred option among PWD and their families (Elson, 2006, Jha et al., 2001). There are a number of benefits for PWD arising from a diagnosis (Pratt & Wilkinson, 2001), including a sense of relief, because it allows for planning and provides an explanation for troubling behaviors and emotional responses within a medical framework that attributes cause to a physical factor outside the patient's control (Smith & Beattie, 2001). It may also mark the end of a difficult stage of confusion and uncertainty and allow for legal protections such as power of attorney to be awarded to next of kin.
The first and last authors conducted a community-based project investigating the management of dementia in a rural/remote region of an Australian state, where they conducted focus groups with GPs, PWD, carers and a range of allied and other health and aged care workers. In the course of this research, aged care workers, community nurses and carers of PWD expressed concern at what they perceived to be significant delays in receiving a formal diagnosis of dementia for their relative or client. In contrast, the local GPs described formal diagnosis of dementia as being relatively unimportant and focused more on what they perceived to be problems with the aged care health system and a lack of resources and support services for PWD (Hansen, Robinson, Mudge, & Crack, 2005). In light of this finding these authors decided to expand the study to investigate the issue of diagnosis in greater depth. We invited additional researchers to join the research team and collected more data focused specifically on diagnosis through in-depth interviews and additional focus groups (see Methods section below). The research team members hold varying positions on the relative importance of early diagnosis, however, we were united in our aim of achieving a greater understanding of the GP perspective on the issue.
Section snippets
Participants
Initially, five GPs working in a single practice located in a remote rural area of an Australian state were recruited for a focus group to explore general issues related to dementia care in general practice. These GPs were the only GPs working in the remote rural area. This focus group was part of the above mentioned community-based investigation (Hansen et al., 2005). In 2005–2006 thirteen additional GPs were recruited who could be expected to have a range of different experiences diagnosing
Findings
Twenty-four GPs participated in the study (eleven females and thirteen males). Six of these GPs worked in rural practices, eight in a large town and the remainder in urban practices in a capital city. The major themes in GPs' accounts of the diagnosis of dementia have been grouped under the headings of ‘recognizing dementia’, ‘holistic viewpoint’, ‘family members and patients’ and ‘medication’.
Discussion
The sample of GPs used in this study cannot be described as representative of all Australian GPs due to the small sample size and the use of purposeful not random sampling. However, they are very similar to the overall GP population in Australia in terms of age, sex and numbers of years practicing (Charles, Britt, & Valenti, 2004). We consider that our findings are likely to be transferable to similar situations and thus helpful in understanding the diagnosis of dementia in general practice
Conclusion
GPs are unlikely to start diagnosing dementia early until they see benefits for their patients in doing so. As GPs value the wishes of older people to continue living home, irrespective of whether or not they have dementia, increasing the availability of community-based support services for older people with and without dementia would serve to improve the quality of life of older people and possibly increase rates of early diagnosis of dementia. It may also be of value to further educate GPs
Acknowledgements
We wish to acknowledge the support received from the Australian Commonwealth Department of Health and Ageing through the Primary Health Care Research Evaluation and Development Strategy Research Capacity Building Initiative and a Mid-Level Primary Health Care Research Fellowship together with the JO & JR Wicking Trust and the ANZ Trustees. We are also grateful to the health care professionals, the persons with dementia, the relatives of persons with dementia and others who participated in our
References (41)
Dementia: sociological and philosophical constructions
Social Science & Medicine
(2004)- et al.
Global prevalence of dementia: a Delphi consensus study
Lancet
(2005) - et al.
General practitioners on dementia: tasks, practices and obstacles
Patient Education and Counseling
(2000) The geriatric medicine workforce in Australia supply and requirements 1996–2007
(1997)- et al.
Disclosing a diagnosis of dementia: a systematic review
International Journal of Geriatric Psychiatry
(2004) - et al.
Implementing a screening and diagnosis program for dementia in primary care
Journal of General Internal Medicine
(2005) - et al.
Dementia in primary care: the first survey of Irish general practitioners
International Journal of Geriatric Psychiatry
(2006) - et al.
The evolution of the general practice workforce in Australia 1991–2003
Medical Journal of Australia
(2004) - et al.
Diagnosis and management of dementia in primary care at an early stage: the need for a new concept and an adapted structure
Theoretical Medicine and Bioethics
(1999) The role of general practice and the primary care team in dementia diagnosis and management
International Journal of Geriatric Psychiatry
(1996)
Do older adults presenting with memory complaints wish to be told if later diagnosed with Alzheimer's disease?
International Journal of Geriatric Psychiatry
Outing the researcher: the provenance, process and practice of reflexivity
Qualitative Health Research
Professionalism reborn
From senility to Alzheimer's disease: the rise of the Alzheimer's disease movement
Milbank Quarterly
Qualitative research in health: An introduction
Structuring and deconstructing the course of illness: the Alzheimer's disease experience
Sociology of Health and Illness
Barriers to the provision of care for people with dementia and their carers in a rural community
Australian Journal of Primary Health
Successful qualitative research: A practical introduction
Holism in primary care: the views of Scotland's general practitioners
Primary Care Research and Development
Can delays in the recognition of dementia in primary care be avoided?
Aging and Mental Health
Cited by (95)
A training program for primary health care nurses on timely diagnosis and management of dementia in general practice: An evaluation study
2020, International Journal of Nursing StudiesCitation Excerpt :People with dementia are recurrent users of healthcare services due to the nature of the condition (Australian Institute of Health and Welfare, 2016). General practice and other primary care settings are the dominant contact point for people with dementia and the main avenue of health care (Brodaty et al., 1994; Hansen et al., 2008). However, research indicates that considerable barriers exist to the general practice team providing diagnosis and management of dementia in the primary care setting (Koch et al., 2010).
Exploring diagnostic strategies for memory complaints in older adults: A retrospective general practice database study
2024, International Journal of Geriatric PsychiatryEmpowering general practitioners in dementia care: The ANTISTIGMA education intervention in Europe
2023, International Journal of Geriatric Psychiatry
- ☆
This research was supported by the Australian Commonwealth Department of Health and Ageing Primary Health Care Research Evaluation and Development Strategy (PHCRED) and the associated Researcher Development Program (RDP), the JO & JR Wicking Trust and the ANZ Trustees.