Ageing and Disability

Jan 12, 2024

Informed Opinion - Prof Xavier V. Pereira

My mother passed away December 5, 2023 at the age of 91. She experienced both physical and mental disabilities in the later years of her life. She, like many others her age, had clinical features of dementia. She had also fractured a long bone of the leg, the femur, that had resulted in restriction of mobility. She required full time assisted care. She was previously known for her mental strength and physical mobility which helped define her as a teacher, as a person who was involved in many activities in the parish, and as an active member of the community she lived in. Many ageing people, like my mother, experience mental and physical disabilities that change their lives irreversibly.

Disabilities affect normal functioning. These include the ability to carry out activities of daily living (personal functioning), the ability to interact with others (social functioning) and the ability to work (occupational functioning). Disabilities also impact negatively on one’s quality of life.

Research conducted by the WHO has revealed that about 50 per cent of people above the age of 70 suffer from mental health disorders and disability. These disorders include neurocognitive disorders like dementia, and common mental disorders like depressive disorders and anxiety disorders. Thus, a large proportion of disabilities in the elderly are mental disorders.

Pope Francis dedicated the month of December, 2023 to people with disabilities as an acknowledgment of the fact that many people suffer from disabilities. The Pope, who recently celebrated his 87th birthday, also suffers from physical disabilities.

DALYS or Disability Adjusted Life Years, introduced by the World Health Organisation (WHO), is a measure to estimate disability due to a disease or health condition and its impact on human beings. It is defined as the sum of the years of life lost due to premature mortality (death) and the years lived with a disability due to prevalent cases of the disease or health condition in a population.

In low-income countries, for example, some countries in Africa, the problematic diseases, that have the greatest impact on health-related disability are infectious diseases, for example malaria, typhoid, and dysentery. Whereas in high and middle-income countries, Non- Communicable Diseases (NCDs) like heart disease, diabetes mellitus and hypertension predominate. Mental health disorders, for example schizophrenia and depressive disorders, are also listed in the top 10 causes of disability in high income countries. Further information about DALYs can be sourced from the internet.

An issue that is often overlooked in the discussion of disability is the burden of care that carers experience caring for people with disability. Close family members who take care of their elders with disability also experience challenges. Some experience burnout. Others who are sole providers of care feel trapped and stressed. Reactions like apathy and resentment may also emerge. Sometimes the burden of care can result in extreme behaviour, like in Japan where it was recently reported that some elderly people with disabilities had their lives ended by family members who were caring for them. This is indeed sad news, and could have been prevented if the carers had received assistance from the state.

The governments of some countries have addressed the burden of care in carers by providing respite care. Respite care allows carers to take well deserved rest from continuous care for their family members with disability. Some countries also provide residential assisted living or day care for those with disabilities. In Malaysia most of these services are provided by private entities and incur cost. The Malaysian Ministry of Health though, has provided rehabilitation services through their departments of Rehabilitation Medicine in many of the government general hospitals. Rehabilitation is crucial in reducing disability. Rehabilitation often includes physiotherapy and occupational therapy. Rehabilitation is a service that faith-based organisations, including Christian churches can provide for people with disability.

My encounters with the elderly have revealed that they are often cognisant of their disabilities and the burden of care experienced by the people who take care of them. Some who suffer prolonged illness and disability wish that God will end their suffering. Their cry is like that of the psalmist in Psalm 6 – “Have mercy on me Lord, for I am faint. Heal me Lord for my bones are in agony. My soul is in deep anguish. How long, Lord, how long? Among the dead no one proclaims your name. Who praises you from the grave?” This is a cry of despair. I have observed that pastoral care can play a vital role in addressing this anguish and despair. Pastoral care is crucial for people in all age groups, especially the elderly. This again is a service that faith-based organisations can provide.

As more people live longer, there will correspondingly be more people with disability. I often remark that the cost of longevity is dementia. I would like to expand this statement to read that the cost of longevity is disability. The more we realise and accept that ageing often entails disability, the better we can embrace this fact and take measures to prevent or reduce disability. We also must acknowledge the fact that age is certainly a number.

(Xavier V. Pereira is a medical doctor, psychiatrist and psychotherapist, and an adjunct professor at Taylor’s University School of Medicine. He is also co-founder, director and pro bono psychiatrist of Health Equity Initiatives, an NGO that serves refugees with mental health challenges.)