Alzheimer's and Related Disorders Society of India

STRiDE was an ambitious four-year project in seven countries aiming to build capacity around generating and using research to support the development of policies to improve quality of life of people with dementia and their carers. The project's innovative approach combined rigorous academic research and hands-on civil society advocacy. This paper explores the project's unique strategy for policy change and compiles case-studies from several of the STRiDE countries. Finally, we share lessons learned and next steps to keep momentum for policy change going in each of these countries - and beyond.

Involving people living with dementia in service design and planning has become more common in high-income countries. It remains rare in low- and middle-income countries where two-thirds of the world's people with dementia live. In this commentary article, we explore the barriers to inclusion of people living with dementia in planning in low- and middle-income countries and make a case for the inclusion of people living with dementia in care and service planning. We suggest how this can be done at individual, community or national and state level using the following principles: 1) respecting the rights of people living with dementia to self-determination; 2) valuing people living with dementia's unique understanding of dementia; 3) creating a culture of active inclusion which creates a space for people living with dementia to participate and 4) ensuring appropriate accommodations are in place to maximise participation.

Low- and middle-income countries (LMICs) are challenged with a disproportionately high burden of noncommunicable diseases (NCDs) and limited healthcare resources at their disposal to tackle the NCD epidemic. Understanding the patient journey for NCDs from the patients’ perspective can help healthcare systems in these settings evolve their NCD care models to address the unmet needs of patients, enhance patient participation in their management, and progress towards better outcomes and quality of life. This paper aims to provide a theoretical framework outlining common touchpoints along the patient journey for NCDs in LMICs. It further aims to review influencing factors and recommend strategies to improve patient experience, satisfaction, and disease outcomes at each touchpoint. The co-occurrence of major NCDs makes it possible to structure the patient journey for NCDs into five broad touchpoints: awareness, screening, diagnosis, treatment, and adherence, with integration of palliative care along the care continuum pathway. The patients’ perspective must be considered at each touchpoint in order to inform interventions as they experience first-hand the impact of NCDs on their quality of life and physical function and participate substantially in their disease management. Collaboratively designed health communication programs, shared decision-making, use of appropriate risk assessment tools, therapeutic alliances between the patient and provider for treatment planning, self-management tools, and improved access to palliative care are some strategies to help improve the patient journeys in LMICs. Long-term management of NCDs entails substantial self-management by patients, which can be augmented by pharmacists and nurse-led interventions. The digital healthcare revolution has heralded an increase in patient engagement, support of home monitoring of patients, optimized accurate diagnosis, personalized care plans, and facilitated timely intervention. There is an opportunity to integrate digital technology into each touchpoint of the patient journey, while ensuring minimal interruption to patients’ care in the face of global health emergencies.

‘Health is a dynamic state of complete physical, mental, spiritual and social well-being and not merely the absence of disease or infirmity’, ‘determinants’ of which are ‘behavioural, biological, socio-economic and environmental factors’ according to WHO, for which, integrative medicine is a great complementary for the care of persons and management of diseases. Slow but an effective holistic therapeutic route that can play a supportive role in the treatment of Alzheimer’s, the most common form of dementia. Volunteering and counselling many, I have found these therapies person-centrically effective for those affected by disease, their caregivers and their family. Plausible option of using therapies like Yoga, stretch Pilates, music, dance, laughter, pet and creative arts as a tool to reduce psychological and social impact of diseases at individual and community levels are valuable. Today, Yoga has permeated not only into people’s daily lives but also field of medicine. Research confirms that Yoga is safe and an inexpensive therapy to avail of. Music knows no language and is a medium that expresses that which cannot be spoken and cannot stay unexpressed. It serves as a conduit for emotional and psychological ‘ventilation’ that all need in various moments in one’s lives. At diagnosis of or in early stages of dementia, I find Yoga and music to be an excellent combination to bring positive changes within one’s lives.

<p class="abstract"><strong>Background:</strong> Vertigo is a common clinical symptom in the community as well as in specialist settings. Depression and anxiety are common among vertigo patients and have a significant impact on the course of illness.</p><p class="abstract"><strong>Methods:</strong> This study was conducted at the outpatient clinics of Department of ENT, Government Medical College, Kottayam. Zung self-rating anxiety and Zung self-rating depression scales were used. </p><p class="abstract"><strong>Results:</strong> There were 158 patients in the study. The commonest diagnosis was benign paroxysmal positional vertigo (BPPV) (76; 48.1%) followed by migrainous vertigo (MV) (41; 25.9%), Meniere’s disease (MD) (31; 19.6%) and vestibular neuronitis (VN) (10; 6.3%). 74 (46.83%) patients had depression. Depression was most prevalent among MD (26; 83.87%) followed by MV (29; 70.73%). Mean depression score was highest with MD (58; SD=8.136) followed by MV (54.29; SD=10.441). 70 (44.03%) patients had anxiety. 50 being women and 20 men. A diagnosis of anxiety was most common in MD (25; 80.6%) followed by MV (33; 80.5%). Mean anxiety score was highest in MD (56.48; SD=11.003) followed by MV (54.15; SD=12.041), A diagnosis of anxiety was most common among patients with MD (25; 80.6%) followed by MV (33; 80.5%).</p><p class="abstract"><strong>Conclusions:</strong> There is a high prevalence of depression and anxiety in Meniere’s disease and migrainous vertigo in India as evidenced by this study. Identification and appropriate management of coexisting mental health problems to address the disability, poor quality of life and protracted course is an integral part of managing vertigo.</p><p class="abstract"> </p>

Appropriate management of advanced dementia requires it to be recognised as a terminal condition that needs palliative care. Interventions during this stage should be carefully chosen to ensure the improvement or maintenance of the quality of life of the person with dementia. Advanced care planning is an important aspect of dementia care. Carers and relatives should be educated and encouraged to actively participate in discussions related to artificial nutrition, cardiopulmonary resuscitation (CPR) and other medical interventions.

Assessment of cognitive functions is an integral part of evaluation of elderly persons. Cognitive assessment is commonly used for the screening for cognitive impairment, differential diagnosis of causes, rating severity of the disorder and monitoring the disease progression. There is a well documented tendency for cognitive tests to underestimate the abilities of older people in developing countries like India. This gives rise to a substantially higher risk of mistaken diagnosis of dementia. Epidemiological studies conducted in India since 1990 were reviewed with the focus on cognitive assessment methods used in these studies. Cognitive assessment tools developed in western context were translated and adapted for the purpose of cognitive screening in general. Difficulties encountered while assessing the cognitive functions were analyzed. Specificity was low with many cognitive screening tools.2. Cognitive screening test like Mini Mental State Examination can overestimate cognitive impairment.3. Language barriers and low education can lead to difficulties in assessment.4. Low education can result in inappropriate response due to educational misinterpretation as opposed to cognitive dysfunction.5. Dementia is considered as a part of normal aging.6. Lack of familiarity with western calendar can make mistakes in assessing orientation. 7. Cultural beliefs about dementia are a barrier to its acceptance and diagnosis. 8. Factors like sensory impairments, depression, other psychiatric and neurological disorders and physical disabilities can make cognitive assessment difficult. Clinicians and health care workers face several barriers in assessment of cognitive functions of the elderly persons in India Accuracy of assessment of cognitive functions can be improved by adapting the tools to suit the socio-cultural setting, adjustment of cut points, translation and replacement of culture specific items and development of culture free tests.

Summary In a country that shuns hospitalization of the elderly, regarding it as disrespect of those who helped youngsters evolve, Heritage Hospital (HH)is a welcome change, a model and pioneer stand-alone geriatric hospital. With its non-ambulatory services looking after sick elderly, HH is like an extended family of seniors. HH's love and fresh air complement its Meals-on-Wheels program, guided by the nutritionist's healthy food. HH's Volunteer Guild; its Diabetes Club, ever growing with India's dramatic rise in the number of diabetics; its Senior Net Club's Click@50, making elders computer savvy; and Grandparent-Grandchild and Golden and Silver Couple contests celebrated on October 1st, are all widely appreciated, enforcing strong values Indians still share on marriage and family. Heritage brings together 10,000 seniors in Hyderabad, strengthening its motto of Eastern philosophy with its strong emphasis on care for the elderly.

This community-based epidemiologic study of dementia in a rural population in India investigated the prevalence of various dementing disorders in the community, psychosocial correlates of the morbidity, and assessment of the risk factors associated with dementia. A door to door survey was conducted to identify elderly people aged 60 and above. A total of 2067 elderly persons were then screened with a vernacular adaptation of the MMSE. All those who scored 23 and below had a detailed neuropsychological evaluation by CAMDEX-Section B, and the care-givers of the people with confirmed cognitive impairment were interviewed using CAMDEX-Section H to confirm the history of deterioration or impairment in social or personal functioning. In the third phase the subjects with confirmed cognitive impairment were evaluated at home as to whether they satisfied the DSM-III-R criteria for dementia. Subcategorisation of dementia was done based on ICD-10 diagnostic criteria. Five percent of those whose screening was negative were randomly selected and evaluated during each stage. Sixty-six cases of dementia were identified from 2067 persons aged 60 and above, a prevalence rate of 31.9 per thousand. After correction this rate was 33.9 per thousand. Fifty-eight percent of the dementia cases were diagnosed as vascular dementia and 41% satisfied the criteria for ICD-10 dementia in Alzheimer's disease. There were more women in the Alzheimer's disease group; smoking and hypertension were associated with vascular dementia while a family history of dementia was more likely in the Alzheimer's group. Dementia is an important cause of morbidity in the geriatric population in this community, where families take responsibility for the care of relatives with dementia.