The diagnosis and management of dementia can be challenging. The variance in the symptoms of dementia and the natural acceptance of these symptoms as a part of ageing delays its recognition as a pathological process. The National Institute of Health and Clinical Excellence (NICE) in collaboration with the Social Care Institute for Excellence (SCIE) provides guidance for diagnosing and managing dementia1. It describes with high methodological rigour the pharmacological, psychological and social interventions for people diagnosed with dementia. The guideline applies to both medical and non-medical service providers, as well as carers of people with dementia. The NICE-SCIE guideline also gives direction for adaptation to various settings.
The burden of cognitive impairment in India varies widely234. The State of Kerala reports the highest prevalence of dementia in the country5. In this direction, the use of standard guidelines amongst neurologists would make the management of dementia more evidence-based. Adoption of existing national or international guidelines is known to improve evidence-based clinical practice and quality of care6. This study, therefore, explored the barriers in using the NICE guidelines for dementia amongst the neurologists in their regular clinical practice in Kerala.
The present study was undertaken by Health Action by People, a not-for profit non-Government Organization in Thiruvananthapuram district, Kerala between March and August 2018, after procuring ethical clearance from the Institutional Ethics Committee.
Exploratory interviews of neurologists were undertaken to understand the barriers in using guidelines, particularly the NICE-SCIE guideline for managing dementia. Fourteen in-depth interviews were conducted in two phases. The interview guide was developed exclusively for this study and was pre-tested. It included questions on the awareness and use of guidelines for dementia management, in general, the use of NICE guidelines, and the factors influencing the guidelines’ use. For this after interviewing the initial six consultant neurologists the schedule was modified appropriately. A total of 12 consultants were interviewed in the first phase. In the second phase, two consultants were interviewed who had a particular interest in dementia care. Written informed consent was obtained from all the participants. All interviews were audio-recorded and transcribed verbatim to allow detailed analysis. Researches reviewed the transcripts and independently developed codes. The emerging themes were discussed with fellow researchers and specialists in dementia care. After refinements, the final overarching themes were identified.
All respondents encountered dementia patients in their clinics at least on a weekly basis, while a few of them saw such patients daily. Three overarching themes emerged from the analysis of these interviews as listed in Table I. Quotes (Q) listed in the text are detailed in Table II.
Theme 1- Lack of standardized approach to dementia care: It emerged from the in-depth interviews that neurologists broadly did not adopt any guidelines for managing dementia in their clinical practice. Some of them were ignorant of any guidelines for dementia care, particularly the NICE guidelines (Q1, Q2). Few of the respondents (neurologists) were aware of other guidelines in dementia such as the American Academy of Neurologist guidelines7. They expressed practical difficulty in following voluminous guidelines and the need for training in guideline-based management of dementia. A readable, user-friendly edition of guidelines which will increase the utilization was their expressed preference. Overcrowded outpatient departments and working under time pressure emerged as the primary deterrent for following guidelines (Q3). It was opined that a formal discussion about care plan, exercise and cognitive stimulation programme did not happen in practice. There was also a perception that the NICE guidelines were not suited to the Indian socio - cultural setting. The essential criteria for a guideline to be applied clinically include its adaptability, readability and feasibility in a given context8. Many respondents felt that the lack of essential infrastructure, both physical and human resources, hindered the operationalization of any guidelines (Q4). Moreover, the recommendations necessitate the services of trained para-medical and other supporting staff members as well which is lacking in the current setting as perceived by most of the interviewees (Q5).
Theme 2- Viewpoints of the caregivers and family members: Most of the study respondent felt the pressure from the caregivers and family members to start pharmacological treatment early in the disease course (Q6). They found it challenging to convince the caregivers to implement non-pharmacological interventions as mentioned in standard guidelines. The preferences of family members for pharmacological management over the non-pharmacological measures are also documented9. The value that NICE guidelines could add to non-pharmacological management was also not acceptable to some of the consultants (Q7). The clinical practice guidelines for managing dementia developed by the Indian Psychiatric Society also document the importance of non-pharmacological therapy for the management of cognitive symptoms and associated non-cognitive behavioural problems10. Often, the caregivers did not perceive dementia as a disease, but a part of the natural ageing process. Hence, the compliance to treatment was inadequate. One of the respondent (a dementia care expert) even opined that the therapeutic nihilism for dementia and related disorders inhibited people from seeking treatment (Q8).
Theme 3- Need for health system preparedness: The specialists felt that the critical factor for guideline implementation should stem from the political and administrative initiative: the government’s policy decision will bring in significant differences in the management of dementia. Many consultants opined that families found it challenging to cope with the expenses, consequently opting inadequate care. It was suggested that the current social security measures at the governmental level are inadequate to meet the demands of dementia care (Q9). The ideal management which was envisaged as a team work collaborating with nurses, psychologists, psychiatrists, physiotherapists, geriatricians and neurologists was not felt as feasible in the current scenario. Untrained supporting staff (for cognitive evaluation) and absence of teamwork (nursing, psychologists, psychiatrist and physiotherapists) were identified as significant barriers to the implementation of any guideline (Q10). In this context the need for adequate training of the support staff on cognitive assessment and its management was deeply felt. In this context various replicable models of training programmes for rural healthcare providers have been documented with proven utility and effectiveness1112.
The consultants expressed a need for adaptation of NICE guidelines to better suit the Indian sociocultural setting. Compatibility of the guideline with the existing health system is an essential determinant for its acceptance and implementation13. A user-friendly version of the guideline would also improve its use amongst the healthcare professionals. As the implementation of guidelines in a clinical setting also depends on various other factors, complained and streamlining of para-medical staff and hospital management should also be explored.
Financial support & sponsorship: This research was funded by the National Institute for Health Research (NIHR) [Dementia Prevention and Enhanced Care (16/137/62)] using aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Conflicts of Interest: None.
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