DESK REVIEWS | 07.01.05. Which health or long-term care providers are responsible for coordinating the care of people with dementia?
DESK REVIEW | 07.01.05. Which health or long-term care providers are responsible for coordinating the care of people with dementia?
We do not have standard long-term care for people living with dementia. Within the public sector, people living with dementia who are diagnosed, can get medication for free and will have to get prescription every few months. They would need to come for an assessment by a specialist (neurologist or geriatrician) every 6 months and get a new prescription. Primary care units offer outreach services for those in late stages (health care team visits the patient).
Families predominantly provide long-term care for persons with dementia at their homes (ARDSI, 2010). There is multidisciplinary care provided by few clinics located in tertiary referral hospitals. The team generally consists of specialists such as a neurologist or psychiatrist, psychologist, psychiatric social worker, speech therapist, occupational therapist and are often associated with NGO partners like ARDSI chapters, NMT, and Samvedna which further provide in-depth support.
For example, the Dr R. M. Verma Sub-speciality block at NIMHANS has 10 in-patient beds exclusive for persons with dementia, which are provided at subsidised rates. This speciality block provides counselling, cognitive stimulation and speech therapy for the persons living with dementia, and also provides family caregivers with dementia counselling and support.
Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf
The national strategy document states that the stakeholders responsible for the achievement indicators of the fourth action step (cognitive screening, diagnosis, and management of dementia) are the ‘Ministry of Health, the Ministry of Home Affairs, and the Ministry of Social Affairs (according to the ability at each level) (Ministry of Health Republic of Indonesia, 2015a, p.29). We assume that this would also include the care coordination. However, this document does not provide further details on the management or care coordination pathway.
The Alzheimer association in Indonesia has taken its steps to support care coordination. We have learnt informally that ALZI is testing a new program called ‘care navigator’, which provides online support to family carers by referring them to relevant services, connecting them to experts who can help them address problems they are facing at home, such as behavioural and psychological symptoms of dementia (BPSD), combined with education sessions on dementia care skills.
Ministry of Health Republic of Indonesia. (2015a). Ministry of Health Regulation No. 67/2015 on Geriatric Services in Public Health Center (Permenkes No. 67/2015 Tentang Penyelenggaraan Pelayanan Kesehatan Lanjut Usia Di Pusat Kesehatan Masyarakat). Kementrian Kesehatan Indonesia, 1–140.
Neurologists, psychiatrists, geriatricians, psychologists, occupational, and physical therapists, specialist nurses are few but are responsible for coordinating the care of people with dementia (Alzheimer’s Disease International, 2017). Once neurologists make a diagnosis through clinician judgment and based on medical history, laboratory tests, and scans performed by laboratory technicians and radiologists respectively, they prescribe medications. Psychologists or psychiatric nurses provide psychosocial interventions while other specialists like psychiatrists and occupational therapists are referred for further management. Often, the specialists are not available (particularly in rural areas) and therefore reliance is on the general medical officers and nurses who may not have the expertise on dementia care (Musyimi et al., 2019).
Alzheimer’s Disease International. (2017). Dementia in sub-Saharan Africa: Challenges and opportunities. London, UK. https://www.alzint.org/u/dementia-sub-saharan-africa.pdf
Musyimi, C., Mutunga, E., & Ndetei, D. (2019). Stigma and dementia care in Kenya: Strengthening Responses to Dementia in Developing Countries (STRiDE) Project. In World Alzheimer Report 2019: Attitudes to dementia (pp. 121–122). London, UK: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf
Mexico does not have a long-term care system and, therefore, these services are not available within this context. Regarding health system services, there are no specific areas responsible for coordinating care. Hence, no specific care strategies or programs for people with dementia are currently in place.