Remembering those who have lost their memory

A file photo of a woman, suffering from Alzheimer’s desease, holding the hand of a relative in a retirement house in Angervilliers, eastern France (Photo: AFP)

This September marks the fifth global World Alzheimer’s Month, when an international campaign to raise awareness and challenge stigma against the disease is taking place in more than 60 countries and many organisations observe September 21 as the World Alzheimer’s Day with the theme “Remember Me”. It is disheartening that in Asia Pacific region with China and India having the largest population of older persons, people living with dementia, of which Alzheimer’s is the most common form, will triple between now and 2050, with increase from 23 million in 2015 to almost 71 million by 2050. The challenges being faced in the countries of the region are the limited awareness of dementia, the false perception that dementia is a natural part of ageing, inadequate human and financial resources to meet the needs of people with dementia, and inadequate training for professional carers. The stigmatisation and misinformation that surrounds dementia is not only a regional concern but remains a global problem.

There is currently no cure for dementia, which knows no social, economic, or ethnic boundaries but a limited range of support is available for people with dementia and their care. In many nations Alzheimer associations exist with branches or chapters throughout the country. In India Alzheimer’s and Related Disorders Society of India (ARDSI) with 20 chapters provides information and support and can advise of any services available in the desired area, as well as answer any specific questions which care givers may have. However, currently with limited healthcare available to tackle the disease, there is need for more prominent role for primary and community care, which will bring down the cost of care, scale up coverage and improve the coordination and integration of existent care. As the latest Alzheimer’s Report by Alzheimer’s Disease International (ADI, 2016) points out there is need for more people with dementia to be diagnosed, and treated comprehensively with continuous care. Clear and evidence-based dementia care pathways, which define roles and responsibilities within the care system, that are person centered and efficient, need to be established in all health systems, and monitored for progress towards universal coverage. Lack of research on the effectiveness of key components of dementia healthcare is striking, and should be considered an urgent priority globally. A “Zero Draft” Global Action Plan on Dementia currently being developed by the World Health Organisation in response to advocacy by ADI and others to address the growing issue of dementia should be taken seriously by all countries, including India.

Along with promoting the development of health and community care systems to deal with an increasing number of people with the disease, it is also necessary to raise awareness of risk reduction strategies which may delay the onset of the disease for some individuals and reduce future numbers of people with dementia and develop national dementia action plans. India needs to support further research in dementia care and also bring greater focus on it in the health policy. Specific steps need to be taken to bring greater awareness and de-stigmatisation of dementia. A few NGOs in the country are building effective coalitions for partnership between policy makers, clinicians, researchers, care givers and people with dementia and promoting the development of care services that are responsive to the needs of people with dementia and their family carers. While the government must develop educational and training facilities for dealing with dementia for healthcare providers, it must also develop community support for family care givers and paid carers.

It is seen that confusion about the differences between dementia and normal ageing contributes to delays in getting access to appropriate treatment and services. There is need to raise community awareness about dementia and provide access to timely and appropriate information for individuals who are concerned about their memory. The person with dementia should be included as much as possible in decisions about their care and support. We need “dementia-friendly communities”, which not only promote social engagement of people with dementia but also raise awareness on the needs of care givers, their quality of life issues and reduce risk factors that may contribute towards the growing incidence of the disease.

At present we lack adequate and appropriate in-home community care support, residential care, and respite services that provide access to meaningful activities which contribute towards improving quality of life of people with dementia and of their carers. Service providers need support in terms of funding and also training to provide person-centred dementia care. There is need for more awareness on management of behavioural and psychological symptoms of dementia. Besides people need to be made aware of the legal rights of a person with dementia. Soon after a person is diagnosed with dementia, the person must have an opportunity to document their wishes regarding their care options and also about end of life care plans

In absence of adequate and affordable qualified care givers, in most countries family care givers provide support to people with dementia. However, not enough attention is paid to the impact of care on the informal care givers, which is not only time consuming but also drains the person of physical and mental health. It also has financial implications as often the family care giver has to make adjustments in terms of working hours and career choices with negative impacts on employment. Day to day caring responsibilities can have adverse affects on the carer and not enough is being done in societies to provide relief. Many more facilities and services need to be developed and promoted for people with dementia and their carers as this month is once again a reminder of not to forget those who are affected with memory loss especially because of Alzheimer’s and other forms of dementia.

Mala Kapur Shankardass is a sociologist and gerontologist. She works as associate professor, Maitreyi College, University of Delhi.