Pathways to care for people with dementia in India: An exploratory study using case vignettes.

BACKGROUND: Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India. AIM: This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia. METHODS: As part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, and to contribute to an analysis of dementia care policies and systems in India, case vignettes were used to illustrate the diverse situations that people with dementia and their families may experience when seeking care in the Indian context. Eight hypothetical, but realistic cases of people with dementia were created by a multi-disciplinary team with experience in dementia care in India, to map out the likely care journeys of each case. RESULTS: Investigating eight diverse care trajectories of people living with dementia highlighted important patterns relevant to the Indian context. We identified delays in dementia diagnosis to be attributed to low awareness of dementia among the general public and medical professionals in addition to a critical shortage of specialist services involved in facilitating dementia diagnosis. Post-diagnosis, support was recognized as limited and associated with considerable out-of-pocket (OOP) costs. Families primarily provide long-term care for people with dementia till end of life. CONCLUSIONS AND RECOMMENDATIONS: Several steps need to be taken in order to improve dementia care in India. Increasing dementia awareness among both medical professionals and general public is essential. Shortages in dementia specialists can be addressed in part through appropriate task shifting. Lastly, more research is needed to develop evidence-based community interventions to support informal care provision for persons with dementia in India.

Estimating the number of people living with dementia at different stages of the condition in India: A Delphi process.

INTRODUCTION: Numerous studies have previously estimated the dementia prevalence in India. However, as these estimates use different methodologies and sampling strategies, generating definitive prevalence estimates can be difficult. METHODS: A Delphi process involving eight clinical and academic experts provided prevalence estimates of dementia within India, split by sex and age. The experts were also asked to estimate the number of people potentially living at different stages of the condition. A priori criteria were used to ascertain the point in which consensus was achieved. RESULTS: Our consensus estimates generated a dementia prevalence of 2.8% (95% CI = 1.9 to 3.6) for those aged 60 years and above in India. Consensus was achieved across age and sex prevalence estimates, with the exception of one (females aged 60-64). Our experts estimated that 42.9% of people living with dementia in India had a mild severity. CONCLUSIONS: The findings indicate that there could be approximately 3.9 million people living with dementia in India, of which 1.7 million could be living with dementia of mild severity. Such estimates can better help researchers and policy makers to estimate the true cost and impact of dementia in India and can inform resource allocation decisions.

Understanding, experiences and attitudes of dementia in India: A qualitative study.

India is the world's second-most populous country and there are about 5.3 million people with dementia in India. Only one out of ten people living with dementia in India ever gets a diagnosis, care or treatment. There are various obstacles to deliver dementia care and support to people living with dementia and their carers. Furthermore, there is inadequate understanding of dementia in the general public and within the health care professionals. Studies in India indicate that people with dementia experience stigmatisation in society as well as neglect from their families. Social prejudice associated with dementia makes it a challenging experience, in addition, it makes the persons with dementia and carers feel isolated and stigmatised. Focus groups and individual interviews were used to explore perceptions, beliefs and experiences of dementia across a number of stakeholders in India, with an effort to understand stigma towards people with dementia. Participants were recruited in two diverse cities of India (Chennai and Delhi), and were comprised of a range of key stakeholders, including persons with dementia (n = 8), caregivers (n = 19), health care professionals (n = 16) and the general public (n = 15). Following a thematic analysis, we identified three overachieving themes; (1) Poor awareness, (2) Stigma and (3) Barriers to accessing care. These all occurred within the context of socio-cultural beliefs. Whilst each stakeholder group had different experiences of dementia, it was common for all participant groups to use stigmatising language associated with dementia. In many cases, stigmatising beliefs and poor understanding of dementia resulted in poor care. There is an apparent need to raise awareness of dementia in India across all stakeholder groups; the fact that participants were able to self-identify that they had a lacked awareness of the condition may indicate that these groups are receptive to learning more about dementia.

Cognition, Behavior, and Caregiver Stress in Dementia during the COVID-19 Pandemic: An Indian Perspective.

OBJECTIVES: Little is known regarding the cognitive and behavioral status of patients with dementia and their caregivers in lower middle-income countries during the COVID-19 pandemic. This study aimed to understand the impact of the pandemic on persons with dementia and their caregivers in India. METHODS: This was an observational study. A cohort of 66 persons with dementia and their caregivers were evaluated during the COVID-19 pandemic in 2 specialist hospitals in South India. Caregivers were interviewed at 2 distinct time points of the pandemic: during the national lockdown and 5 months after during later periods of the "cluster of cases" transmission phase. Participants were assessed via telephone utilizing validated instruments (Neuropsychiatric Inventory [NPI], Clinical Dementia Rating [CDR] Scale, and Depression, Anxiety and Stress Scale [DASS-21]) and a semi-structured questionnaire. The questionnaire documented sociodemographic information, clinical history, infection measures adopted, changes in caregiving routines, involvement in functional rehabilitation activities, and access to medical and long-term care support services. RESULTS: The 2-phase follow-up study found a significant worsening of behavior in dementia patients, demonstrated by a difference in the NPI sub-domain scores for anxiety (mean difference [standard deviation, SD] = -0.552 [1.993], t58 = -2.109, p = 0.039) and eating disturbances (mean difference [SD] = -1.121 [2.493], t59 = -3.424, p = 0.001). A relatively high proportion of patients developed anxiety (cumulative incidence = 24.53%) and eating disturbances (cumulative incidence = 26.92%), without having these symptoms at baseline. There was a trend toward an increase in proportion of persons with severe dementia (19.7% vs. 39.4%) on follow-up. Caregiver distress reported was significantly associated with neuropsychiatric symptoms (r = 0.712, p < 0.001) and dementia severity (ρ = 0.365, p = 0.004). In addition, difficulties in accessing medical care persisted between the 2 assessments, and there were statistically significant differences between functional rehabilitation activities such as indoor activities (p < 0.001), outdoor activities (p = 0.013), and physical exercises (p = 0.003) between baseline and follow-up. CONCLUSION: Findings suggest interruption of functional rehabilitation activities and disruption in medical care services are likely to have had an adverse impact on patients with dementia and contributed toward caregiver distress.

Care for dementia patients and caregivers amid COVID-19 pandemic.

BACKGROUND: Multiple efforts have been taken across the world to bridge gaps in evidence and provide recommendations for dementia care and caregiver support during the COVID-19 pandemic. We aimed to review the available literature on measures used to alleviate the negative impacts of the pandemic on dementia care. METHODS: We searched three databases: PubMed, CINAHL and PsycINFO to identify studies that described strategies that were recommended or taken to provide care and support to persons with dementia and their caregivers during the COVID-19 pandemic. RESULTS: We included a total of 37 papers, originating from high, middle and low-income countries. We also included 6 papers exploring safety of COVID-19 vaccinations. Infection prevention recommendations predominantly involved providing consistent reminders to persons with dementia to engage in infection prevention measures and included measures to restrict wandering in long-term care settings to reduce spread of infection. Medical care included tele and video consultations to maintain and monitor clinical stability. Guidance for continuing rehabilitation activities for persons with dementia through remotely conducted cognitive stimulating activities, physical exercises and environmental modifications were further highlighted by multiple studies/articles. In addition, strategies to support caregivers were also advised and included teleconsultations and psycho-educational programs. CONCLUSION: The COVID-19 pandemic has exposed gaps in health and social care systems across the world, but has also revealed the enduring dedication of clinicians, expert groups and dementia support organizations to modify and adapt existing dementia care services to meet the needs of persons with dementia and their caregivers during periods of emergency.

Experiences of people with dementia and their caregivers during the COVID-19 pandemic in India: A mixed-methods study.

BACKGROUND: The COVID-19 pandemic has unprecedented consequences for the management of chronic diseases such as dementia. However, limited evidence exists on the condition of persons with dementia and their caregivers during the pandemic in lower-middle-income countries (LMICs). The study aimed to provide insights into the experiences of persons with dementia and their families during the early phases of the pandemic in India. METHODS: This study adopted a mixed-method approach. One hundred and four persons with dementia and their caregivers were evaluated via telephone using validated instruments and a semi-structured interview guide. We used the quantitative data collected to establish a baseline, whereas qualitative data were analysed thematically. RESULTS: The study revealed that persons with dementia and their caregivers experienced difficulties during the pandemic, which included worsening of behaviour, problems in accessing care, disruptions in functional activities and struggles in enforcing infection prevention contributing to caregiver distress. An important finding that emerged was the unchanging reality of caregiving for families. The relative success of the public health response to the COVID-19 pandemic contrasted with the lack of awareness and formal support for dementia. CONCLUSIONS: The COVID-19 pandemic has exposed the vulnerabilities of persons with dementia and their caregivers. This calls for a collaborative reframing of medical care and public health policies to address dementia care.

The effect of COVID-19 isolation measures on the cognition and mental health of people living with dementia: A rapid systematic review of one year of quantitative evidence.

BACKGROUND: COVID-19 prevention and control policies have entailed lockdowns and confinement. This study aimed to summarize the global research evidence describing the effect of COVID-19 isolation measures on the health of people living with dementia. METHODS: We searched Pubmed, PsycINFO and CINAHL up to 27th of February 2021 for peer-reviewed quantitative studies about the effects of isolation during COVID-19 on the cognitive, psychological and functional symptoms of people with dementia or mild cognitive impairment. The Joanna Briggs Institute critical appraisal tool was used to conduct the quality assessment. PROSPERO registration: CRD42021229259. FINDINGS: 15 eligible papers were identified, examining a total of 6442 people with dementia. 13/15 studies investigated people living in the community and 2 in care homes. Out of 15 studies, 9 (60%) reported changes in cognition and 14 (93%) worsening or new onset of behavioral and psychological symptoms. Six studies (46%) reported a functional decline in daily activities in a variable proportion of the population analyzed. INTERPRETATION: COVID-19 isolation measures have damaged the cognitive and mental health of people with dementia across the world. It is urgent to issue guidance that balances infection control measures against the principles of non-maleficence to guarantee fair and appropriate care during pandemic times for this population.