DESK REVIEWS | 07.01.01. Where and how do people get a diagnostic assessment for dementia?
DESK REVIEW | 07.01.01. Where and how do people get a diagnostic assessment for dementia?
In the public health system (SUS) diagnosis would typically follow a pathway where a case would initially be identified by a GP at a Primary Care Unit and would be referred to a specialist for confirmation (usually neurologist or geriatrician). Yet in the public health system, people may also be diagnosed at other levels of care when people access them for other reasons, and clinicians may suspect of dementia (A&E, general hospital, other specialities outpatient care). In the private sector, the typical pathway is that families/patients who are suspecting that something is wrong, may take the patient directly to a specialist, usually a neurologist. As in the public services, clinicians from the private sector may identify cases also in other levels of care (hospital outpatient care). It is important to remember that rates of underdiagnosis are high in Brazil.
Families usually approach general physicians for the assessment of their older relative showing symptoms suggestive of dementia. Specialists who are trained in dementia (neurologists, psychiatrists, or geriatrics) would deliver a diagnosis, but there are some primary physicians with an MBBS degree (Bachelor of Medicine, Bachelor of Surgery) who diagnose dementia without having special qualification or specific training to do so (Kumar et al., 2018). Families are advised by primary physicians to visit specialists for diagnosis and treatment, but due to lack of availability of adequate specialists, costs associated with services, and low levels of awareness, very few families may visit specialists (Kumar et al., 2018; Sathianathan & Kantipudi, 2018).
In summary, persons with dementia and their families may consult a general practitioner based on their convenience and prior experiences (Hossein et al., 2017). They may also see a specialist directly or may be referred to one (i.e., the specialist that usually provides the dementia diagnosis) (Hossien et al., 2017).
Hossien, S.A., Loganathan, S., Kolar Sridara Murthy, M., Palanimuthu Thangaraju, S., Bharath, S., Varghese, M., 2017. Pathways to care among persons with dementia: Study from a tertiary care center. Asian J. Psychiatr. 30, 59–64. https://doi.org/10.1016/J.AJP.2017.07.002
Kumar, CT Sudhir; Kishore, S., 2018. The dementia diagnosis process, Part 1: Getting started and selecting a doctor | Dementia Care Notes. Available from: https://dementiacarenotes.in/dementia-diagnosis-find-doctor/
Sathianathan, & Kantipudi, S. J. (2018). The dementia epidemic: Impact, prevention, and challenges for India. Indian Journal of Psychiatry, 60(2), 165. https://doi.org/10.4103/PSYCHIATRY.INDIANJPSYCHIATRY_261_18
In 2015, the Indonesian Neurologist Association/Perhimpunan Dokter Spesialis Saraf Indonesia (PERDOSSI) issued a clinical practice guideline on dementia diagnosis and management. The document outlined diagnostic paths in the different levels of healthcare services (PERDOSSI, 2015).
In primary care, patients coming with subjective complaints, change of activities of daily living (ADL), or brought to the clinic due to the family/carer’s concern on their cognitive changes will be considered for assessment. The physician should interview the patient and/or the carer about the history of the complaint and then perform physical examination of the patient, especially of the cardiovascular and neurological system. The patient’s cognitive function will then be assessed using the Mini Mental State Examination (MMSE). The physician should also document changes on the patient’s activities and cognitive function using the AD8 instrument based on the carer’s report. Patients with abnormalities in clinical or neurological examinations, MMSE score of less than 24, or AD8 score of 2 or more should be referred to a neurologist (in the second level of healthcare services) or to a memory clinic (in the third level of healthcare services). If these criteria are not met, the patient is advised to return for a check-up in 6 months (PERDOSSI, 2015).
In hospital (secondary level of healthcare), patients presenting with complaints suggestive of dementia or referred by the primary care will undergo a similar process to that of primary care. In an addition the Geriatric Depression Scale should be performed to exclude depression as well as a clock-drawing test (CDT), and the Montreal Cognitive Assessment (MoCA). Blood sample should be taken to check the patient’s lipid profile, renal and liver function, glucose level, and electrolytes. A CT-scan should be done to aid diagnosis. Patients with abnormalities in physical examination, AD8 > 2/MMSE < 24/CDT < 24/MoCA < 24 are advised to be referred to a memory clinic (PERDOSSI, 2015).
In the memory clinic (tertiary healthcare level), additional exams performed include other neuropsychological tests, the Neuropsychiatric Inventory (NPI), other blood tests (fasting blood glucose, folic acid, and vitamin B12 levels, thyroid function) and an electrocardiogram. Other specific tests according to indication can also be ordered, such as VDRL for syphilis or a HIV test. An MRI (preferable) or CT should be performed, followed by electroencephalogram or lumbar puncture if indicated. These additional exams are expected to aid diagnosis of dementia and its causes (PERDOSSI, 2015).
During our interview for WP3 with a general practitioner managing a geriatric clinic of a primary care centre, we learnt that dementia screening practice is not routine practice. The physician informed us that most of the dementia cases documented in that centre already received a diagnosis in the hospital and then reported back to the centre for documentation and administrative requirements (Source: WP3 FGD info from GP). However, this is contradictory to another statement by the physician. The GP explained that based on the new Ministry of Health’s regulation no. 4/2019 on the Minimum Standard of Service, the centre has now routinely started to screen older people with several tools that include a cognitive instrument (Abbreviated Mental Test) (Ministry of Health Regulation No. 4/2019 on Technical Standard to Fulfill Quality of Basic Service in Minimum Standard of Healthcare Service (Permenkes No. 4/2019 Tentang Standar Teknis Pemenuhan Mutu Pelayanan Dasar Pada Standar Pelayanan Minimal Bidang), 2019). More about this regulation will be discussed in this document in Part 7, Dementia Care System Organisation, Community-based Services for Dementia, and Diagnostic services (in primary care)).
The stratified screening and diagnosis pathway outlined above seems to be typical of patients using the National Health Insurance. However, the pathways of patients with self-funded access to healthcare vary greatly depending on the patient’s economic status and geographical area. Some patients decide to go directly to the secondary or tertiary healthcare providers, or even undertake tests abroad. Some secondary health centres have sufficient resources to perform the examinations outlined for tertiary health care providers and thus can provide the level of diagnosis at secondary level. It is also important to note that a lot of patients receive their diagnosis of dementia whilst being treated for other issues (WP3 FGD info from neurologist and GP).
Ministry of Health Regulation no. 4/2019 on Technical Standard to Fulfill Quality of Basic Service in Minimum Standard of Healthcare Service (Permenkes no. 4/2019 tentang Standar Teknis Pemenuhan Mutu Pelayanan Dasar pada Standar Pelayanan Minimal Bidang , (2019) (testimony of Ministry of Health Republic of Indonesia).
PERDOSSI. (2015). Panduan Praktik Klinik: Diagnosis dan Penatalaksanaan Demensia. PERDOSSI.
A typical path to dementia diagnosis in Kenya is through assessment by a doctor via physical examination, review of medical history, MRI scans and characteristic changes in thinking, behaviour, and daily functioning. Laboratory tests are mainly done for younger people, to exclude any other possible causes that are treatable. In instances where one is diagnosed with dementia, referrals are made to neurologists (if resources allow) so as to determine the form of dementia for proper disease management (Mbugua, 2018).
Mbugua, S. (2018). The condition affects the elderly, but is not a normal part of ageing. Daily Nation, 8 July. Nairobi, Kenya. https://nation.africa/kenya/healthy-nation/dementia-brain-disease-that-robs-people-of-sunset-years-64456
Mexico does not have a Dementia Care system in place at the moment and, therefore, there is no typical path for diagnostic assessment. Additionally, given the lack of knowledge and high stigma, usually people with “possible” dementia and/or their family members only seek services when advanced symptoms are present. Social security institutions in the largest metropolitan areas can refer people with suspected cognitive impairment or visibly advanced symptoms of some type of dementia to a specialist for further evaluation and some diagnostic tests. However, entry access will depend on the availability of specialists, such as psychiatrists, geriatricians, or neurologist who, as described in part 2, are scarce. Therefore, a large percentage of people remain undiagnosed. Furthermore, the few public institutions that have Memory or Dementia care services (such as the National Institute of Neurology in Mexico City), are the only places that can conduct rigorous evaluations and diagnostic assessments, as they have the human and technological resources available. Unfortunately, they can only oversee a very small number of those in need. Very few memory clinics are in place and only few third level public hospitals include specialists that are trained to diagnose and provide treatment and management for dementia.
Visiting the family practitioner for advice is the typical path to access a diagnosis for suspected dementia (Vally, 2010). These pathways may differ across the two healthcare sectors, whereby private sector users approach the family doctor (GP) for assistance and public sector users’ first port of call typically is community healthcare clinics, day hospitals, and/or traditional healers. Mental health service users who access a mental healthcare facility will be assessed for dementia using neuropsychological assessment techniques (Vally, 2010, p.393).
Persons with suspected dementia should undergo further tests via specialist investigations and referrals (Vally, 2010). However, with constrained resources in the public sector, it is unclear how many service users are indeed referred for specialist testing and thorough physical and neurological examination (no routine monitoring and surveillance). Limited research in South Africa shows that dementia, if recognised and understood by health practitioners, is often viewed as a normal part of aging (Kalula & Petros, 2011; Prince et al., 2016a). This means that persons with suspected dementia are not referred for further investigation, diagnosis, and treatment.
Kalula, S. Z., & Petros, G. (2011). Responses to Dementia in Less Developed Countries with a focus on South Africa. Global Aging, 7(1), 31–40.
Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M., & Karagiannidou, M. (2016a). World Alzheimer Report 2016: Improving healthcare for people living with dementia. In Alzheimer’s Disease International (ADI). https://doi.org/10.13140/RG.2.2.22580.04483
Vally, Z. (2010). The assessment and management of dementia. South African Family Practice, 52(5), 392–395. https://doi.org/10.1080/20786204.2010.10874014