Lest we forgetThe number of dementia patients is expected to double by 2030; it is imperative to sensitise the Nepali people on Alzheimer’s and dementia
A growing number of the elderly in Nepal are suffering from varied problems, as longevity is a societal success story but also a strain on health resources. As Nepali society is passing through a phase of modernisation, the traditional family support system is breaking down as family members are migrating to the Capital or out of the country. The elderly people left behind at home are facing health and social problems. Many elders today are living alone and are vulnerable to not only loneliness and depression, but degenerative diseases such as dementia, and also other physical diseases.
The Senior Citizens Act 2006 defines individuals over 60 years of age as elderly. Nepal’s retirement age policy does not match the present context. People are still productive at the age of 60, but lack of opportunities to get a new job despite their immense experience has made them feel obsolete. Meanwhile, improvements in public health have expanded life expectancy to 68 years for males and 70 years for females. It’s time we all came forward and gave space and scope to our senior citizens to live a dignified life, enhanced space for retired elders and promoted motivational programme interventions to give them a healthy and fulfilling social life. Lack of engagement despite their potential and loss of identity after retirement has led to dejection, depression, anxiety and mental illness like dementia.
The Alzheimer’s Disease International, a global federation of Alzheimer associations, estimated that there were 78,000 people with dementia in Nepal. The figure is expected to swell to 134,000 individuals by 2030. Dementia is a disease and not a consequence of ageing. Alzheimer is a type of dementia that causes problems with memory, thinking activities and behaviour. Nepali society is still not well aware of Alzheimer’s and other types of dementia. Many people believe that it is old age madness. Hence, it is imperative to sensitise the general public on Alzheimer’s.
The concerned authorities need to give serious attention to Alzheimer’s and dementia and related complications like physical disability, cognitive dysfunction, falls and fractures, depression, impaired vision and hearing. It is very difficult to watch loved ones spiral into a slow decline, which affects everyone at home with guilt, grief, loss, anger, sadness, and fear.
The concerned stakeholders should ensure that senior citizens with Alzheimer’s disease or other forms of dementia can live with dignity and a secure life by taking the following actions. Awareness programmes need to be conducted as lack of awareness and understanding of dementia contributes to fear and stigmatisation which leads to social isolation and delays in seeking help.
Awareness and access
The government should establish an easy process to claim the allowance allocated by the Ministry of Health for Alzheimer’s patients. Due to the difficult process of claiming the allocated Rs100,000, many families have not been able to get the money. A broad public health approach is needed to improve the care and quality of life of people with dementia and caregivers. The aim and objective of the approach should be to have a dementia policy or plan integrated into the existing health policies and plans. There should be a national response to facilitate policymakers and other stakeholders to address the impact of dementia as an increasing threat to the national health issue.
Since people with dementia and their families face a significant financial impact due to the cost of providing health and social care when incomes have shrunk or jobs have been lost, support in the form of pensions and insurance schemes can provide protection to this vulnerable group. The rights of people with dementia should be protected. Formal recognition will help reduce discriminatory practices.
Specialised Alzheimer’s residential and day care centres with a resource centre should be established in communities, along with secure transportation facilities. With only a few secondary and tertiary care institutions for the elderly, there is a need for the government to establish specialised care facilities for elderly people with dementia. Such specialised care facilities can provide residential and day care and fully secure pick up and drop off service to transfer them between their home and the centre. People will be happy knowing that such welfare services are available where their family member will be cared for efficiently and with care by trained health care professionals.
Caregiver training institutes should be established nationwide, and dementia care training should be incorporated in health related training programmes. Due to the limited number of specialised dementia caregivers compared to the increasing number of Alzheimer’s and related dementia sufferers, it has been observed that a caregiver institution is necessary as dementia is becoming a growing burden where family members have to play the role of unprepared informal caregivers.
This is a serious problem in not only managing the disease but also a health burden as family members may suffer from physical and mental disorders such as compassion or burnout fatigue. Moreover, patients with Alzheimer’s and related dementia can be aggressive. They may show aggressive behaviour or beat people around them, even family members or doctors. Therefore, specific training and training institutes must be established for well-informed, efficient practice and development of human resources.
Memory clinics should be established in Kathmandu and regional centres, and the need for specialist geriatric dementia professionals should be endorsed. By establishing memory clinics, healthcare services can be provided where people can be made to take memory tests to find out early if they are suffering from this disease. In Nepal, the number of dementia specialists is very small, hence there is a need to build a healthcare system.
Medicines for Alzheimer’s and related dementias should be supplied free of cost or at least at subsidised prices throughout Nepal. Many medicines were made available free by the government in 2007 as per the health care policy. This plan seems to be under revision currently, but there is no free supply of medicines for Alzheimer’s and related dementia. A month’s supply of medicines for Alzheimer’s and dementia can cost Rs8,000-10,000. Additionally, families have to bear rehabilitation costs. Therefore, patients suffering from Alzheimer’s and related dementia should be provided free medicines as this is one of the most expensive diseases.
Thapa is founder chairperson of Hope Hermitage Nepal and founding chair and managing director of The Hope Hermitage