Pathways to care for people with dementia: An international multicentre study

Abstract

Objective: the aim of the present study was to characterize the clinical pathways that people with dementia (PwD) in different countries follow to reach specialized dementia care. Methods: we recruited 548 consecutive clinical attendees with a standardized diagnosis of dementia, in 19 specialized public centers for dementia care in 15 countries. The WHO "Encounter Form", a standardized schedule that enables data concerning basic socio-demographic, clinical and pathways data to be gathered, was completed for each participant. Results: the median time from the appearance of the first symptoms to the first contact with specialist dementia care was 56 weeks. The primary point of access to care was the general practitioners (55.8%). Psychiatrists, geriatricians and neurologists represented the most important second point of access. In about a third of cases, PwD were prescribed psychotropic drugs (mostly antidepressants and tranquillizers). Psychosocial interventions (such as psychological counselling, psychotherapy and practical advice) were delivered in less than 3% of situations. The analyses of the 'pathways diagram' revealed that the path of PwD to receiving care is complex, diverse across countries, and that there are important barriers to clinical care. Conclusions: the study of pathways followed by PwD to reach specialized care has implications for the subsequent course and the outcome of dementia. Insights into local differences in the clinical presentations and the implementation of currently available dementia care are essential to develop more tailored strategies for these patients, locally, nationally and internationally.

Montessori intervention for individuals with dementia: feasibility study of a culturally adapted psychosocial intervention in Pakistan (MIRACLE)

“…In particular, the behavioural symptoms and personality changes that often accompany the dementia syndrome, including apathy, aggression, depression and hallucinations, may be associated with significantly worse outcomes in people with dementia, as well as high levels of distress, depression and physical symptoms among family members or other care partners. 4,6 In countries like Pakistan, the primary intervention for behavioural and psychological symptoms of dementia is pharmacological, 7 and this type of intervention has a limited evidence-base in the context of dementia and may be associated with significant morbidity and mortality. 8 Thus, there is a need for psychosocial interventions that are cost-effective and easy to deliver in low-resource countries, several of which have a growing evidence base and are included in the National Institute for Health and Care Excellence guidelines for dementia care.…”

A Qualitative 5-Country Comparison of the Perceived Impacts of COVID-19 on People Living with Dementia and Unpaid Carers

“…Social support services and post-diagnostic support structures are not available or easily accessible in all countries. Evidence from lower-and middle-income countries (LMICs) highlights how people living with dementia are predominantly, if not solely, cared for by their family or within their community [12][13], with care pathways differing greatly across countries [14]. This suggests that the pandemic may affect dementia care to a lesser degree than in high-income countries where more services appear to be utilised.…”

Toward the Integration of Technology-Based Interventions in the Care Pathway for People with Dementia: A Cross-National Study

“…As aforementioned, in the majority of the cases, the main problem presented at first contact with the health care system is related to memory issues [ 31 , 32 ] and, especially, at this first stage, individuals are experiencing uncertainty, confusion, anxiety, worrying about memory problems, and future life [ 33 ]. Since the definition of clinical care pathways for dementia starts at this point, it could be strategic to introduce technologies at this early stage to guarantee familiarity [ 8 ] with new devices and assure the acquisition or improvement of digital competencies since perceived difficulties become more pronounced as dementia severity increases [ 34 , 35 , 36 ].…”