A Review of Diagnostic Process and Postdiagnostic Support for People With Dementia in Rural Areas

Abstract

Purpose: Early diagnosis of dementia allows the affected individuals to make plans, and helps services to identify and act on need. Previous work has suggested that obtaining an early diagnosis in rural areas can be difficult. This paper discusses diagnosis and postdiagnostic support for people with dementia, with a focus on service delivery in rural areas. Methods: A review of published English language literature 1999 to 2011 identified in Medline, PsycINFO, PubMed, Cochrane Library, and ScienceDirect. Results: Primary care services play a key role in accessing services in many health care systems. The role of primary care staff, and in particular general practitioners, is greatest in rural communities where specialist service access is often reduced. Despite this, rural staff often report limited training on supporting people with dementia. Postdiagnostic services can be more difficult to access in rural areas, and informal caregivers in rural areas can be more reluctant to seek such services. Transport difficulties and distance from specialist services can act as a barrier to service use. Memory services have been offered in both rural and urban areas. Conclusions: Addressing stigma, supporting staff, and signposting access are important in all areas, but seem to be particularly important in rural areas. Training and support for general staff in rural areas can be improved. Memory services provide one way of delivering services in rural areas. Service planners should take negative perceptions of dementia, barriers to access, and training of generalist service providers into account when designing dementia services in rural areas.

Keywords

dementia diagnosis memory clinic memory services rural

Recognition of the need for the early diagnosis of dementia has been spurred by the development of treatment options and acceptance of dementia as a major public health issue.¹ Early diagnosis has become even more salient as medications have become available that delay cognitive decline.^2-6 A wide range of early interventions have been developed to meet the needs of people with dementia and their carers at the early stages of the illness, including medicinal interventions, for example cholinesterase inhibitors and antidepressants, and psychosocial interventions such as peer support groups, education, and counseling.^7-14

Despite differing attitudes to diagnosing dementia at an early point,^15,16 it has been argued to be a prerequisite for improvements in dementia care.^17,18 Early diagnosis creates an opportunity for both practitioners and service users to collaborate in setting goals for care and support and making key decisions about postdiagnostic support needs and care, taking a more proactive approach to life-changing decisions.¹⁹ Timely diagnosis has been shown to enable people with dementia and their carers to learn about the condition, prepare for its likely progression, plan support, and obtain referrals for support services.^2,3,15,20-22 From a medical and practical standpoint, timely recognition of dementia allows health and social care staff to manage workload, plan resources, seek to prevent crises, and subsequently reduce associated costs.^3,21,23 In addition, delaying cognitive decline delays admission to long-term care and decreases the cost of health care.³

Despite recognition in the research literature reporting on evidence highlighting the importance of timely diagnosis of dementia, there have been consistent long-standing reports of barriers to early dementia diagnosis in both urban^24,25 and rural health care.^26-32 More recently, there have been calls for earlier diagnosis^17,33-35 that are now part of government policies and strategies.^36-40 Older adults living in many rural areas experience numerous barriers to accessing general health care, including transportation difficulties, limited health care supply, lack of quality health care, social isolation, and financial constraints.^{26,29-32,41-45} Similarly, health professionals practicing in rural areas face specific disadvantages, including limited access to specialists and availability of appropriate assessment tools enabling provision of a differential diagnosis in dementia.²⁷ An increasingly aging population is likely to put pressure on general health care provision and also increase the need for specific postdiagnostic dementia services available to individuals living in both urban and rural areas.

A literature review was performed to examine aspects affecting the diagnosis of dementia in remote and rural locations. The following 3 main themes were identified and examined: (1) the role of primary care, (2) barriers to diagnosis and postdiagnostic support in rural and remote areas, (3) and memory clinics.

Method

Five computer databases were searched, including Medline, PsycINFO, PubMed, Cochrane Library, and ScienceDirect. Additional references were identified through hand searches of selected journals and bibliographies of pertinent publications.

A thematic analysis process was used to extract the key themes from the literature.

Search terms included the following: dementia, Alzheimer’s disease, diagnosis, primary care, memory clinic, and barriers. These search terms were matched with “rural” and “remote.” Publications were included in the review if they were published in the English language, across all countries, and between 1999 and 2011.

Results

A total of 66 papers were identified. Of these, 17 papers discussed the diagnosis of dementia in a rural area (Table 1). Additional literature providing information about policy, history, and current dementia initiatives was omitted from the summary table, but is included in the discussion.

An examination of the selected literature identified the following 3 key themes around the provision of dementia services in rural and urban areas: (1) dementia diagnosis in primary care, (2) barriers to diagnosis and/or postdiagnostic support, and (3) memory clinics.

Table 1.

Thematic Summary of Reviewed Studies

Study	Country	Study Objective	Sample	Methods	Major Findings
1. Role of primary care
Ahmad et al⁴⁶	England	Investigate the attitudes, awareness, and practice of GPs regarding early diagnosis and management of patients with dementia and perceptions of local specialist services to identify training or support needs.	GPs/n = 1011	Online questionnaire	Older GPs were more confident in diagnosing and giving advice about dementia, but less likely to feel that early diagnosis was beneficial, and more likely to feel that patients with dementia can be a drain on resources with little positive outcome. Younger GPs were more positive and felt that much could be done to improve quality of life. GPs in general felt they had not had sufficient basic and postqualifying training in dementia, and overall knowledge about dementia was low.
Alexander and Fraser⁴⁷	Australia	Investigate the views of GPs working in rural northwestern New South Wales regarding diagnosing, treating, and referring patients with mental health problems.	GPs/n = 144	Postal questionnaire	Factors preventing diagnosing dementia were reported to be managing presenting problem (69%), limited time for proper diagnosis (51%), patients’ unwillingness to discuss relevant symptoms (42%), and incomplete knowledge of diagnostic criteria (37%). GPs self-assessed as confident in diagnosing dementia; however, there is a perceived lack of mental health professional collaboration.
Boise et al⁴⁸	United States	Investigate dementia assessment by rural GPs.	GPs/n = 78	Focus groups	Physicians thought that neither the patient nor the family wanted to be informed about the diagnosis of dementia. Disclosure was carried out carefully and was influenced by the caregivers. Stigma was argued to be the cause of difficulties in discussing the diagnosis.
Bruce and Paterson⁷	Australia	Understand how carers of people with dementia gain access to community support and to determine potential barriers for carers.	Carers/n = 289	Qualitative interviews	Problems with the interaction between the carer and the general practitioner cause delayed access to appropriate support and information.
Cahill et al⁴⁹	Northern Ireland	Investigate GPs, attitudes and practices in relation to screening, diagnosing, and disclosing a dementia diagnosis to patients.	GPs/n = 300	Postal questionnaire	90% of GPs had never undergone any dementia-specific training. 83% wanted training on dementia. GPs experienced difficulty diagnosing and disclosing a diagnosis of dementia to patients.
Cahill et al⁵⁰	Ireland	Investigate GPs, service needs including training, access to diagnostic resources, and specialist services.	GPs/n = 300	Questionnaire, focus group	GPs felt responsible for the late presentation of dementia in primary care. Stigma was reported to be a major obstacle preventing GPs from being more proactive in recognizing dementia. Rural GPs reported geographical barriers to accessing diagnostic services. Both rural and urban GPs experienced considerable time delays accessing specialist diagnostic services.
Meuser et al⁵¹	United States	Compare rural and urban clinicians in terms of knowledge, confidence, attitudes, and practice. Examine continuing education preferences.	GPs/n = 422, specialists/n = 144, advanced practice nurses/ n = 185, physician assistants/ n = 40	Survey	No difference found between urban and rural clinicians in knowledge, confidence, attitudes, practice, and learning motivation. Rural clinicians found to be more interested in continuing dementia education than urban clinicians.
Cody et al⁷⁶	United States	Examine reported practices of GPs in the diagnosis and management of dementia.	GPs/n = 36, 142 questionnaires	Self-completion questionnaire	30% of respondents experienced difficulty in disclosing the diagnosis to people with dementia and 20% to the family. Male physicians reported less difficulty in disclosure of diagnosis.
De Lepeleire and Heyrman⁵³	United States	Explore how the diagnostic procedure could be improved based on the notion and central role of the GP in making a diagnosis.	NA	NA	There is a need for adapted instruments and procedures. Diagnostic procedure has to be a stepwise, over time spread, roundabout protocol.
Della Penna et al¹⁹	United States	Present an overview of the Dementia Guidelines and Dementia Care Program.	NA	NA	Early diagnosis provides an opportunity for clinicians, patients, and caregivers to collaborate in setting goals for care and making decisions regarding care. Effective management of the needs of patients and their caregivers will help patients and their families to achieve a better quality of life in the face of complex, changing needs.
Downs et al⁵²	Scotland	Assess GPs’ views and practices regarding dementia diagnosis and management. A secondary goal was to determine whether practitioner characteristics were associated with these views and practices.	GPs/n = 278	Self-completion questionnaire	41% of GPs reported difficulty disclosing the diagnosis to patients and family. Female GPs were more likely to experience difficulties disclosing the diagnosis. Reported GPs’ approach to diagnosis and management of dementia was not consistent with recommended practice.
Forbes et al⁵⁴	Canada	Examine the characteristics for older Canadians with dementia, their use of mental health services, and the impact of place (rural/urban) on use of services.	Older Canadians/n = 49 995	Cross-sectional design	The differences between Canadians with and without dementia include place of residence, race, education, living arrangement, social support, sense of community, and use of health care services. Some differences between rural and urban populations with dementia were also found.
Hansen et al¹⁷	Australia	Investigate rural general practitioners’ experiences and understandings of diagnosing dementia.	GPs/n = 24	Focus groups	Diagnosis may involve conflict between GPs, family members/carers, and the people with dementia. GPs did not consider that diagnosing dementia early was particularly important and may in fact be harmful to some patients.
Iliffe et al⁵⁵	United Kingdom	Discuss barriers to dementia diagnosis and management in primary care and educational approaches to enhancing professional skills in the recognition of and response to dementia.	NA	NA	Three educational interventions are proposed to improve dementia care.
Iliffe et al²¹	United Kingdom	Explore the perspectives of primary care practitioners on the early diagnosis of dementia.	Professionals attending training courses/n = 990	Nominal groups	GPs feel inadequately trained to respond to the needs of people with dementia and their families. Resistance to disclosure was not consistently identified as a problem.
Innes et al²⁹	Scotland	Overview of the issues identified by a review of research literature to date on service provision to older people with dementia and their carers in remote and rural areas across the United Kingdom, with specific reference to Scotland.	NA	Literature review	The study discusses the policy implications for dementia services in the context of provision of services to older people and their carers in remote and rural areas across United Kingdom.
Innes et al³⁰	Scotland	Explore views of people with dementia on services in rural areas.	People with dementia/ n = 17	Face-to-face semi-structured interviews	Participants praised services that encouraged a social life, provided stimulation, were appropriate for their needs, the care was “loving,” staff put in additional effort, allowed for connection with the service provider. Participants criticized services that were disorientating, distressing, inappropriate for their needs, when they disliked the service provider, or other service users.
Innes et al³¹	Scotland	Review of service provision for people with dementia and their carers in remote and rural Scotland.	People with dementia/ n = 15, carers/n = 16	Group interviews	35 of 45 participants highlighted gaps in services available to the service user. 1 of the 45 participants did not identify any positive aspects of service use.
Innes et al⁵⁶	Scotland	Investigate barriers to dementia service provision to rural people with dementia and their caregivers, and innovative dementia service provision.	Service providers/ n = 86	Semi-structured interviews, survey	Key barriers to provision of dementia services in rural and remote areas included the following: distance, lack of transport, the cost of services for the user, a lack of choices in services, shortage of skilled staff. Time and resource limitations impeded some of the reported innovative methods to improvement of dementia service provision.
Innes et al⁴⁴	Multinational	Critically evaluate the available evidence from the published scientific literature on informal/family dementia care in rural and remote settings to assess the current state of knowledge, identify support implications, and make recommendations for future research.	Research articles/n = 26	Literature review	Majority of the research exploring family caregiving in rural areas focuses on the experience, use, and barriers to formal service provision. There is limited evidence examining the experiences of rural caregivers and their education and support needs.
Knopman et al²	United States	Investigate factors associated with delay in diagnosis of AD.	Carers/n = 2115 (1480 included in the analyses)	NA	38% of patients with AD received their diagnosis at first consultation. Disclosure at the initial consultation depended on the type of physician seen.
Logan-Sinclair and Davison²⁷	Australia	Discuss diagnostic issues and rural disadvantages identified in New South Wales.	Patients with possible dementia/ n = 88	Retrospective medical audit	31% of the referrals for SPECT for dementia screening were requested by GPs. The remaining 69% of referrals came from 3 physicians, 2 neurologists, and 2 gerontologists.
Mason et al⁵⁷	Scotland	Investigate availability, accessibility, and costs of service provision to rural people with dementia and their caregivers.	Service providers/ n = 86	Survey	Nurses and self-referral were the main access points to dementia services. Identified dementia service gaps included the following: home support (39%), service choices (30%), specialist services (27%), long-stay care (26%), shortage of skilled staff (23%), specialist training (10%), transportation for service users (5%).
Milne et al⁵⁸	United Kingdom	Explore GPs’ attitudes toward early diagnosis of dementia.	GPs/n = 183	Questionnaire	The following 3 variables were found to significantly predict practice: a belief there are benefits to patients from early diagnosis, a belief that negative outcomes may result from a failure to diagnose early, and the accessibility of local support services. 40% of GPs hold positive views and 20% hold negative views toward early diagnosis.
Morgan et al⁴⁵	Multinational	Critically evaluate the available evidence on dementia care and service provision in rural and remote settings from the perspective of formal/paid caregiving.	Research articles/n = 46	Literature review	The reviewed research is descriptive and/or based on small sample sizes, and distributed across the care continuum.
Renshaw et al⁵⁹	United Kingdom	Explore GPs’ views on the early diagnosis of dementia.	GPs/n = 1005	Postal questionnaire	52.3% of GPs felt that early diagnosis was beneficial and only 54.4% felt it was important to look objectively for early signs of dementia. 74.6% had ready access to specialist advice but only half (50.2%) felt local services for dementia were satisfactory. 47.6% of GPs said they had received sufficient training in the diagnosis and management of dementia and 43.9% used specific diagnostic tests or protocols.
Teel²⁸	United States	Investigate rural practitioners’ experiences in dementia diagnosis and treatment.	GPs/n = 19	Interviews	Participants estimated that the time from symptom onset to diagnosis ranged from several months to 1 year, largely dependent on family recognition. Limitations in access to consultants and limited or nonexistent community support and education resources were major impediments to diagnosis and treatment.
van Hout et al⁶⁰	The Netherlands	Identify the GPs’ perception of their tasks, their practice, and obstacles concerning the diagnosis and management of dementia.	GPs/n = 28	Focus groups and self-completion questionnaire	19% of GPs perceived disclosure as more harmful than helpful. Barriers to disclosure were reported to be patients’ hypersensitivity and lack of insight, and GPs’ embarrassment over the term dementia and communicating the diagnosis.
2. Barriers to accessing diagnostic and/or postdiagnostic services in rural communities
Blackstock et al³²	Scotland	Explore experiences of people with dementia and their carers in the context of rural Scotland.	People with dementia/ n = 15, carers/n = 16	Interviews and focus groups	Improved understanding and constituted experience of dementia in rural communities is a prerequisite for improving service provision.
Forbes et al⁵⁴	See role of the primary care theme above.
Hansen et al⁴¹	Tasmania	Identify barriers to provision of care for people with dementia and their carers in a rural community of Tasmania.	GPs/n = 5, ACAT nurses/n = 5, carers/n = 5, community health nurses/ n = 5, support worker/n = 5	Focus groups and semi-structured interviews	Barriers to the effective provision of care for people with dementia and their carers living in rural communities are: distance and isolation, perceptions of geographic and professional boundaries, gaps in health care provider and carers’ knowledge about dementia, and dementia services.
Hansen et al¹⁷	See role of the primary care theme above.
Hope et al⁶¹	Scotland	Review the quality of services provided in rural Scotland.	Rural residents/ n = 1997	Literature review and survey and focus groups	Most rural residents are satisfied with current service provision and accept the relatively lower level of provision as the inevitable price of rural life. The study identified existing gaps in provision and set out a framework within which service provision can be assessed in individual communities.
Innes et al²⁹	See role of the primary care theme above.
Innes et al³⁰	See role of the primary care theme above.
Innes et al³¹	See role of the primary care theme above.
Innes et al⁴⁴	See role of the primary care theme above.
Mason et al⁵⁷	See role of the primary care theme above.
McDonald and Heath⁶²	East Anglia	Explore the provision of services for people with dementia and their carers in the 3 counties of East Anglia.	Strategic managers, team managers or practitioners, and carers’ groups/n = 36	Documentary analysis and interviews	Policy guidance that has focused on the needs of people with dementia has been positively received within agencies, though resource shortages and interagency difficulties have been barriers to progress.
Morgan et al⁴²	Canada	Compare barriers to use of formal services in urban and rural areas.	Directors of care/ n = 11, home care staff/ n = 13, health district board members/ n = 3, physicians/ n = 7, family caregivers/ n = 4, family members of nursing home residents/n = 9	Focus groups	The study discusses the consequences of not using support services and strategies for increasing service utilization are discussed.
Morgan et al⁴³	Canada	Evaluate development of rural interdisciplinary memory clinic.	Memory clinic patients/ n = 137	Demonstration project	The study provides a description of the development, operation, and evaluation of an interdisciplinary rural memory clinic based on 3 years of experience.
Morgan et al⁴⁵	See role of the primary care theme above.
O’Reilly and Strong⁶³	Australia	Investigate caregivers’ perceptions of dementia support services.	Rural carers/ n = 7	Focus group and interview	Services identified as most useful for the carer are respite care and information provision.
Kosberg et al⁶⁴	United States	Compare experiences of African-American and white dementia informal caregivers.	Caregivers/ n = 141	Telephone interviews	African-American carers are shown to be “better” and more satisfied caregivers. The study discusses a number of issues experienced by rural caregivers.
Turner Goins et al²⁶	United States	Present a systematic review of rural caregiving research and provide suggestions for future research efforts.	Research articles/ n = 31	Literature review	Current research makes it difficult to know the extent to which the rural environment influences informal caregiving.
Wenger et al⁶⁵	Wales	Investigate the experiences and use of services by dementia caregivers in a rural area.	Carers/ n = 40	Interviews	Most common problems reported by the carers of people with dementia are those that cause psychological distress. Carers were found to receive both help and appreciation from their families and to perceive neighbors to be helpful if needed.
3. Memory clinics
Banerjee et al²²	United Kingdom	Service evaluation of the introduction of the Croydon Memory Service Model.	Referrals to the service/ n = 290	Mixed qualitative and quantitative methodologies	Specific services for early dementia can increase number of people identified with illness and provided with care. Following the use of the Croydon Memory Service, service users experienced a better quality of life and improved behavioral and psychological symptoms of dementia.
Banerjee and Wittenberg⁶⁶	England	Analyzes the costs and benefits of commissioning memory services for early diagnosis and intervention for dementia.	NA	Examination of the potential public and private savings	The new memory services would cost around £220 million extra per year nationally in England. The estimated savings if 10% of care home admissions were prevented, by year 10 would be around £120 million in public expenditure (social care) and £125 million in private expenditure (service users and their families), a total of £245 million. Under a 20% reduction, the annual cost within around 6 years would be offset by the savings to public funds alone. In 10 years all people with dementia will have had the chance to be seen by the new services. A gain of between 0.01 and 0.02 QALYs per person per year would be sufficient to render the service cost-effective (in terms of positive net present value).
Cheung and Strachan⁶⁷	New Zealand	Identify all publicly funded memory clinics in New Zealand.	District Health Boards/n = 21	Email and telephone survey structured questionnaire	There is variability in the provision of memory clinics in the medium and smaller sized District Health Boards and inconsistency in the level of funded staff across the Boards.
Jolley et al⁶⁸	United Kingdom	Review the objectives of memory clinics including assessment procedures, interventions, legal considerations, spiritual matters, and liaison with other agencies.	NA	NA	Memory clinics have been shown to be a positive development. Much remains to be learned about their optimal use and in particular how they best contribute to the overall pattern of care in dementia and other memory disorders.
Jolley and Moniz-Cook⁶⁹	United Kingdom	Evaluate the structure, function, and procedures used in memory clinics.	NA	NA	Specialist memory clinics complement community services by providing high quality, devoted focus for early intervention, treatment, support, and research.
Lindesay et al⁷⁰	United Kingdom	Determine the characteristics and functions of United Kingdom memory clinics.	Memory clinics/n = 58	Postal questionnaire	There will be a continuing need for memory clinics to provide a focus for clinical dementia research and professional training.
Passmore and Craig⁷¹	United Kingdom	Discuss the role of memory clinics.	NA	NA	The increasing rates of referrals to memory clinics may imply that the clinics are delivering good services. Their benefits should receive greater recognition and publicity, and it would be appropriate to increase their numbers, as suggested by the English NHS National Services Framework.
Willis et al⁷²	United Kingdom	Investigation satisfaction with the service users of the Croydon Memory Service Model.	PWD/n = 16, carer/n = 15	Semistructured interviews, purposive sampling, conventional content analysis	Participants perceived peer support and clear communication as valuable assets provided by the service. The following 7 quality indicators with which to judge services for people with dementia were identified: provision of broad-based care as well as assessment; clear communication about diagnosis and care; continuing peer support groups; easy availability of staff; professional staff behavior; the service working for people with early-onset dementia and their carers; and strategies to manage those with subjective memory impairment but no objective deficits.
Innes et al⁷³	See role of the primary care theme above.
4. Memory clinics in remote and rural context
Boise et al⁴⁸	United States	Evaluate the feasibility of screening and diagnosing dementia in patients aged 75 years or older in 6 rural primary care practices.	Patients over 75 screened/ n = 427	Population screening	The ROAM pilot study resulted in an increase in screening for dementia and a modest increase in the proportion patients who were diagnosed with dementia or mild cognitive impairment, and improved clinician confidence in diagnosing dementia.
Jolley and Moniz-Cook⁶⁹	See memory clinics theme above.
Logan-Sinclair and Davison²⁷	See role of the primary care theme above.
Morgan et al⁴³	See barriers to accessing diagnostic and/or postdiagnostic services in rural communities theme above.
Morgan et al⁴⁵	See role of the primary care theme above.
Passmore and Craig⁷¹	See memory clinics theme above.
Phipps⁷⁴	United Kingdom	Investigate quality issues in memory clinics against a multidimensional framework for assessing quality standards.	NA	Literature review	Development of memory clinics competes with other developments within old age psychiatry services. Significant long-term funding is required to establish and develop memory clinics.
Wackerbarth et al⁷⁵	United States	Investigate urban-rural differences between clinical population experiencing memory problems.	Memory clinic patients/ n = 956	Memory assessment	Both rural and urban patients tend to be female. Urban patients were more likely to reside in a facility and be more educated than rural patients. There were no significant differences in memory assessments between urban and rural patients. Urban family members reported more memory problems, twice as many personality changes, more frequent behavior problems, and more averse reactions to problems.

Abbreviations: GPs, general practitioners; NA, not applicable; AD, Alzheimer Disease; PWD, Person with Dementia; QALY = Quality-Adjusted Life Year.

Role of Primary Care

Primary care comprises health care services that are the first point of contact for all patients. Depending on country and locality, diagnostic process may include being seen by a general practitioner (GP), a nurse, or a specialist. Because of their gatekeeping role in most developed countries, general practitioners are central to the provision of health care for the older population and diagnosing dementia.^{2,17,24,28,46,47,50,53,54,56,59,61,77,78} Following a diagnostic process, appropriate arrangements for postdiagnostic care and support can be made by the primary care team. In light of the demographic trends and rising numbers of dementia diagnoses,^78-82 the responsibilities of primary care are likely to become increasingly pronounced.

In rural communities, the most important interventions for people with dementia have been found to consist of consultative support and community-based education.²⁸ Additionally, an essential skill in the diagnosis and postdiagnostic dementia care provided by the GPs is believed to be an active engagement with patients and their families, for example, careful listening to patients and their families and discussing suspicions with patients and their family.^28,46,51,76

The experiences of GPs practicing in rural and/or urban locations are a focus of 17 studies in this review. The literature reveals a number of good practice examples employed by rural GPs to address the reported barriers in accessing specialist services.^{17,28,45,47,50,51} Rural GPs have been reported to be confident in diagnosing and treating dementia,^47,51 appreciative of a specific diagnosis and family input,²⁸ and to display active involvement in dementia screening.⁵⁰ Hansen et al’s¹⁷ study, exploring GPs’ attitudes to dementia diagnosis using a focus group approach, revealed that Australian rural GPs were more likely than their urban counterparts to discuss the diagnosis of dementia and individual cases. On the other hand, rural practitioners have been found to be less likely to consult with a specialist, preferring to deal with a patient autonomously.⁴ This reluctance has been justified by limited access to specialist services, availability of community support, and patients’ resistance to medical management in rural Australia.¹⁷ In addition, the same study found urban GPs in Australia to be more positive toward dementia medication, early diagnosis, and specialist referrals.^17,45

Specific geriatric training and appropriate support have been proposed to enable both urban and rural GPs to make formal diagnoses and refer patients to appropriate community and social services.^47,76 Increasing GPs’ confidence in the management of patients and supporting good practice could lead to an increase in dementia diagnoses and disclosure, as well as better access to appropriate care and support services for persons with dementia and their caregivers living in both urban and rural areas.

Identified research suggests that primary care physicians’ roles are particularly pronounced in rural communities, where access to specialist services is substantially limited and patients rely on the care available to them.⁷ Similarly, some needs of dementia care providers tend to be specific to rural and remote settings and include transportation issues, limited access to specialist services, and overcoming negative perceptions of dementia.^{17,28-31,54,56,57,63,73,83}

Barriers to Accessing Diagnostic and/or Postdiagnostic Services in Rural Communities

Availability and accessibility of diagnostic and postdiagnostic services have important implications for the quality of life of people with dementia and their caregivers. Access to diagnostic and postdiagnostic dementia services in rural communities in Scotland, Canada, Tasmania, and Australia has been reported to be significantly limited.^{17,29,30,31,41-45,54}

There are a number of barriers to services characteristic to rural areas, with the most prominent including isolation and distances to specialist services, personal care, care homes, access to carers’ groups, support for the person with dementia, and home modifications, as well as disorientating, distressing, or inappropriate care, and poor relationships with service providers and/or other service users.^{30,31,41-45,83} Moreover, existing services in rural Scotland and Australia have been reported to be of poor quality and accessibility by service users.^29-31,63

Innes et al²⁹ consider dementia support services from the perspective of service providers working and living within a rural community. Issues reported by service providers include extended hours of practice, professional isolation, recruitment and retention problems, low morale, and limited professional development. Rural nurses were vulnerable to professional isolation compared to urban professionals. An effective support system and improved access to resources would be required to enhance professionals’ satisfaction and efficiency, which would consequently lead to improvement of general quality of services.^29,56,73,84

Limited availability of long-distance transportation is a severe barrier to accessing appropriate services and consequently impedes timely diagnosis and provision of appropriate support to people with dementia in studies from rural Tasmania,⁴¹ Australia,¹⁷ Scotland,^29-31 and Canada.^42,43 However, some difficulties with access to services have been attributed to a lack of awareness about services among carers and health professionals and stigma associated with dementia.

In addition to poor awareness, there was a self-reported lack of knowledge about dementia by health professionals and uncertainty about the role of health care providers reported by carers in Tasmania. Although the need for more information about available services was stressed by all stakeholders, the community mental health nurses were reported to have the central role in the provision of information and coordination of care for persons with dementia and their carers.⁴¹ Health care providers interviewed in the study by Morgan et al⁴² argued that the provision of specific information and advice in the early stages of dementia would lead to an increased use of services before crisis situations. Regular contact with the health care and community staff has been argued to prevent crisis situations and enable monitoring of support needs, which would diminish the family caregivers’ burden and impact on the health system.⁴²

Stigma associated with dementia has been identified as another problem in rural communities. This includes reports of resistance to using services and social withdrawal attributed to the lack of public awareness, negative attitudes about dementia, perceptions of coping, and desire to protect privacy.^{31,42-45,65,83,85} Despite experiencing high stress levels and concerns about health care, family caregivers have been reported to be reluctant to use existing support services. This is linked to the perceived lack of privacy and concerns about maintaining confidentiality by care home staff.⁶⁵ Moreover, utilization of services by family members was often perceived as an acknowledgement of the inability to provide care or as an unnecessary exploitation of resources. Numerous studies have demonstrated that rural families are more likely to perceive caregiving as their duty, and therefore they refrain from using formal services.^26,54,85

Despite the numerous identified barriers to accessing dementia services, studies on rural communities have revealed some advantages of living in such populations, namely, a strong cultural identity encouraging a more proactive approach to care and supportive informal network.^29-32,41,42 Moreover, individuals with dementia and their carers appreciated services that facilitated socialization and stimulation, suited their needs, provided loving care, and created good relationships with service providers.³² Informal support received from family and members of the community was of a significant value.^29-31 Interestingly, all participants in the study by Innes et al³¹ rated the support they received as better than what they would expect to receive in a more urban environment. Participants argued community spirit and informal support as the main reasons for this phenomenon.

Innes et al³¹ refer to studies indicating an important distinction between urban and rural models of care with regard to rural health care policy and developing services in rural areas. Despite the recent recognition of dementia-related needs and issues, policy makers seem to neglect issues characteristic to rural and remote areas including the specific needs of persons with dementia, numbers of staff, human resources, skill mix, case loads, geography, access to training, accessibility and range of services, and the distribution of these services. In addition, many authors argue for a need for a more responsive approach to the provision of care in rural communities aimed at controlling costs in some health boards and minimizing differences across dispersed rural communities.^{31,54,56,57,62,86}

The barriers to accessing dementia services in rural communities could potentially be minimized by increasing general public awareness of dementia and the provision of adequate information and advice. An area in need of appropriate intervention is stigma and lack of open communication about issues related to dementia.

Memory Clinics

With initiatives to improve dementia recognition and provision of postdiagnostic support, current services are under pressure to increase the numbers of new referrals from the early intervention stream.⁶⁶ One approach to meet this challenge has been the establishment of memory clinics.^36,37

Memory clinics are dedicated medical interdisciplinary establishments specializing in the assessment and diagnosis of memory disorders⁶⁹ and subsequent monitoring of their treatment.⁷⁰ The first memory clinics were set up in the United States in the 1970s and the first clinics in the United Kingdom were established in the 1980s, mainly as academic research centers.^67,71 Most UK clinics are based in hospitals, with some providing home care services.⁸⁷ Jolley et al⁶⁸ argue that clinics should be situated within easy access of the local population and designed according to dementia-friendly guidelines (such as those outlined in the Dementia Services Development Centre Design Audit Tool⁸⁸). The presence of a memory clinic has been shown to encourage early referrals and to facilitate access to postdiagnostic support.⁶⁷

The number of memory clinics, as well as the range of services they provide, has grown considerably in the last decade.⁷⁰ According to White,⁸⁷ there were approximately 246 memory clinics in the United Kingdom in 2004, but there are no official NHS figures and no specific standards or set models relating to them. In addition, the role of clinics has shifted from academic to service provision with an increasing number of establishments offering old age psychiatry services. According to a survey of 58 British memory clinics by Lindesay et al,⁷⁰ the following key functions performed by the clinics were:

specialist assessment or second opinion;

information and advice to patients and caregivers;

treatment initiation and monitoring;

advice on management;

education and training;

screening for drug trials;

screening for other research, and

medico-legal assessments

Referrals to memory clinics are usually made by a range of professionals, with some clinics operating open referral policies.^70,71 The most frequent referral sources reported by the memory clinics in the study by Lindesay et al⁷⁰ included general practitioners (90%), psychiatrists (86%), geriatricians (78%), other physicians (64%), neurologists (55%), other health professionals (41%), and self-referrals (21%). The involvement of memory clinics in postdiagnostic care and support varies.⁶⁸ According to Lindesay et al⁷⁰ only 33% of the clinics perform routine follow-up appointments. The remaining clinics followed up only cases with uncertain diagnosis and/or selected groups only. In contrast, the rural Canadian clinic evaluated by Morgan et al⁴³ offers follow-up assessments at regular intervals (6 weeks, 12 weeks, 6 months, 1 year, and then yearly), using telehealth appointments if required.

A UK example is the Croydon Memory Service Model (CMSM). This service operates according to the following six predefined goals: (1) high acceptability; (2) high appropriate referral rate; (3) successful engagement with people from minority ethnic groups; (4) successful engagement with people with early-onset dementia; (5) focus on engagement with mild cases to enable early identification; and (6) an increase in the overall number of identified dementia cases. This model complements existing health and social care systems by maximizing service efficiency, while providing broadly based care and assessment in people’s own homes. The service is delivered by a multi-agency team that ensures the availability of a range of profession-specific skills. Additionally, all team members, whatever their clinical background, receive appropriate training to complete the initial assessment.^22,66,72

Memory clinic services often go beyond the provision of a medical assessment and an accurate diagnosis. Regular follow-up visits, appropriate referrals, and engagement with caregivers and people with dementia can potentially facilitate the progression from a diagnosis to postdiagnostic support. Some clinics maintain an indirect involvement through local communities. Following the diagnosis, patients are directed to appropriate services and agencies available within the locality.⁷⁰ In comparison, in remote and rural Scotland where access to memory clinics is limited, the referrals to older adults services are made by community care (80%), primary care (71%), self-referrals (60%), community mental health teams (57%), family members (5%), and hospital consultants (5%).⁷³

Memory Clinics in a Remote and Rural Context

The model of care offered by memory clinics may be an answer to some of the problems experienced by rural areas where access to specialist services is limited and there is less variability in medical resources.²⁷ Rural memory clinics can make the diagnostic process more accessible by reducing repeated travel and time to diagnosis.

Morgan et al⁴³ reported on an evaluation of a one-stop rural memory clinic that aims to provide a comprehensive assessment of dementia and make the process more efficient by reducing repeated travel time and time to diagnosis. The clinic offers a multidisciplinary assessment by a neurologist, neuropsychology team, geriatrician, neuroradiologist, and physical therapist. Following the assessment, an interdisciplinary meeting is held to make appropriate decisions. Following the meeting, patients and family meet the neurologist and neuropsychologist to discuss the diagnosis, receive feedback from the clinical assessments, recommendations for management and care, and referrals to local support services. The key advantage of this rural and remote memory clinic is the provision of a one-stop multiprofessional assessment carried out in one day, which minimizes transport issues and burden on caregivers. It also appears to have the potential to integrate a number of responses to support the social, emotional, and legal needs.

Some of the main challenges faced by the team include integration of service development and evaluation, increasing workload, low referral rates from patients in most rural areas, and limited participation by referring physicians. On the other hand, the clinic has consistently received high satisfaction ratings from patients and carers and continues to facilitate interprofessional practice, research, and training.⁴³

In the study by Wackerbarth et al,⁷⁵ the differences between urban and rural families attending memory clinics is discussed. Similarities were reported in the functional abilities of the participants; however, urban residents were more likely to experience memory problems, personality changes, and behavior problems than rural service users.⁷⁵ Despite the differences between urban and rural populations, memory clinics remain an important element of the care pathway in dementia, providing diagnosis and signposting people with dementia to appropriate postdiagnostic support. In addition, the lack of specific guidelines on functionality and structure of memory clinics^74,87,89,90 allows for the services to be tailored to the specific needs of the population they serve.

The increasing rates of referrals to memory clinic services and reported high satisfaction levels highlight the importance of developing more accessible and person-centered diagnostic services.^43,45,71 Existing evidence shows major variations in practice and standards of service provided by the clinics, and so defining the best practice in memory clinic is problematic. Jolley and Moniz-Cook⁶⁹ argue that the future of memory clinics lies in increasing the population coverage by provision of mobile and outreach services, while ensuring that advantage of local support is taken. However, despite the growing interest in the role of memory clinics in provision of dementia diagnosis and subsequent intervention, the evidence on memory clinics running in rural settings is limited.^43,45,48

Discussion

Recent developments in dementia services spurred by an increasingly aging population have resulted in a need for improvements in diagnostic processes. Research evidence shows timely diagnosis to be beneficial to different stakeholder groups.^2,3,21-23,91 However, successful models and approaches that facilitate timely diagnosis need to be tailored to the needs of service users as well as to environments in which care and support are provided.

Access to an accurate diagnosis is mainly facilitated by primary care staff, including nurses and general practitioners. Although health practitioners have been shown to appreciate the benefits of a timely dementia diagnosis,^{3,55,59,92,93} numerous studies show reluctance to make and disclose a formal diagnosis.^59,93 Evidence shows that changes in dementia practice, including nurse-led diagnosis, education, and uniform diagnostic process, could bring significant improvements to early dementia recognition and effective care management.

Memory clinics have attracted significant attention from researchers and practitioners^43,45,71 who present a case for an increasingly important role for this service in dementia care practice. The variability of memory clinics described in the literature suggests that the model is evolving in a way that is more accurately described as memory services. Memory clinics can potentially be adapted to different needs of populations and resources available in particular regions. Memory clinics in rural areas may offer the main point of access to person-centered, accessible diagnostic, and postdiagnostic service that overcome the existing barriers to appropriate care and support for people with dementia and their families.^{22,36,37,44,45,67,69,71} Until memory service models (including memory clinics) are further developed, it may be that the local doctor will remain as the key access point for those concerned about their memories. In very remote areas it may be impractical to develop a memory service and be more appropriate to ensure local doctors are given high quality, up-to-date information about how to conduct assessments and make a diagnosis of dementia, referring only those with complex presentations on to specialist memory services. Where formal services are lacking, another possible future development would be to develop local self-help groups for people concerned about their memories through the work of national voluntary dementia organizations.

Conclusion

Reviewing literature on the selected diagnostic issues in dementia care practice provides a number of important observations. The studies included in this review suggest that the increasing demand on health and social services for people with dementia and their families has been long recognized as a key driver to service development. The calls for improved diagnostic processes that would encourage timely dementia recognition and referrals to support services have resulted in numerous initiatives aimed to develop appropriate models of care and support.

The key issues identified in this review that need to be overcome to address the needs of people with dementia and their caregivers are insufficient training of health professionals, availability and accessibility of postdiagnostic services, and limited evidence around the use of memory clinics in rural contexts. Access to high quality diagnostic models is required to ensure the reduction of false positive diagnoses that may have a detrimental effect on the well-being and quality of life of individuals and their families. Without a diagnosis, individuals are not given access to medical treatments and health and social care services that may provide support as they adjust to their diagnosis. Of course, if there are few local services available and local stigma then a diagnosis may actually contribute to further anxiety and loss of well-being. Improved public awareness and provision of dementia-specific training for staff could lead to a more efficient utilization of health and social care services achieved, for example, through the identification of a population at risk, making appropriate referrals to memory services, and the provision of pharmacological and therapeutic interventions.

Although existing research provides examples of good practice and successful interventions, there is a need to integrate the efforts and strengthen the evidence for making improvements to dementia care practice.

Distinctions between urban and rural models need to be further examined to ensure a successful delivery of dementia care and support to rural populations experiencing memory problems. Government policy and strategy suggest that change is planned; however, it remains to be seen how effective the implementation of ideals will be for those with dementia living in remote and rural areas and for those providing care services.

Footnotes

The authors declared no potential conflicts of interest with respect to the authorship and/or publication of this article.

The authors received no financial support for the research and/or authorship of this article.

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