New Delhi: A national study titled ‘Independent in Old Age: With special focus on Long-Term and Palliative Care in India’ has highlighted how the two biggest challenges faced by the elderly are the fast-paced lifestyles of younger family members as also their own poor financial status.
Conducted by Agewell Research and Advocacy Centre for the UN, the study has revealed that about 66.5% of the elderly surveyed found the fast-paced lifestyles of the younger family members to be their greatest challenge. When questioned if their poor financial status proved to be a great limitation in old age, 60% of them replied in the affirmative.
The study also revealed that an alarming 52.4% of those surveyed faced abuse, mistreatment or harassment and found that “majority of older persons have to compromise with circumstances for the sake of care and support from family members.”
Noting that “there is an urgent need to make every older person financially independent in old age, so that they can afford long-term care and palliative care, whenever they need it,” the study has recommended that “provisions for ensuring independence in old age and long-term/palliative care for frail elderly must be made at all levels – family, society and government.”
Talking about the issue of palliative care, founder of Agewell Foundation, Himanshu Rath, pointed out how the financial position of the elderly usually determined the nature and quality of palliative care they received. “Though providing long-term and palliative care to older persons comes under the purview of family responsibilities in India, it is observed that financially independent older persons or older persons with high networth or having property entitlements in their name are comparatively treated well by their family. Majority of older persons with no/inadequate source of income in old age are prone to neglect and their healthcare, financial and social needs and requirements remain unaddressed,” he said.
With the population of the elderly already touching 130 million in India, Rath said the issue of palliative care for those in the 60 and over age group faced many challenges. “Managing home care for the elderly is a massive challenge as multiple service providers – nursing agencies, physiotherapists and medical suppliers – are small scale, unorganised and therefore extend incomplete care. In India, health insurance coverage is essentially limited to hospitalisation. The concept of geriatric care has remained a neglected area of medicine so far in the country.”
Home-based palliative care services becoming popular
He said while the government of India has also included palliative care in National Health Policy 2017, home-based palliative care services are becoming increasingly popular with care being provided at the doorstep of the elderly patients. “Ideally, this is where people are most comfortable at the end of their lives, surrounded by their loved ones. It is also well-suited to traditional conditions in India where a family member is usually available and willing to nurse the ailing family member,” said Rath.
The survey conducted by the Agewell Foundation had covered 10,000 elderly people through its team of 300 volunteers in May-June 2018. The respondents comprised 5,091 women and 4,909 men. It also gave due importance to both rural and urban areas while picking 5,290 of them from rural parts of the country and 4,710 from the urban centres.
Among the elderly, 56.2% were drawn from the 60-70 age group, 30.2% from the 71-80 age-group and the remaining 13.7% from the 81+ age group.
Most elderly prefer independence in old age
The survey revealed that almost every fourth elderly person (23.44% of respondents) was living alone. “Almost every second elderly (48.88%) is living with their spouse, while about 26.5% of them are living with their children or other family members in old age.
Relatively, it said, the number of elderly living alone was higher in urban areas at 25.3% in comparison with 21.8% in rural areas.
Also, more than half the elderly (51.1%) claimed that they were independent with the percentage being significantly higher in rural areas at 60.7% as compared to urban areas at 40.4%.
Interestingly, during the survey, it was observed that a large number of older persons preferred to live alone or with only their spouse. “Many older persons were found living in the same house, where their children’s family was residing, but they have separate space/rooms/floor and kitchen in the same house. They hardly interact with their children or their family members. Hence they admitted that they are living alone,” it said.
The survey also revealed that though most of the elderly enjoyed their independence, a majority of them were financially dependent on others in their old age. It revealed that 68.24% of them enjoyed ideological independence, 60.54% enjoyed psychological independence, 69.45% enjoyed social independence and 61.81% enjoyed physical independence in their old age. However, only 36.81% were financially independent in the autumn of their lives.
About 88.5% of the elderly said healthcare services were needed to ensure their independence in old age. Similarly, about 74.1% stressed the need for a social support system and recreational facilities in the localities to enable them to lead more enjoyable lives. About 35.4% of them said old age/disability/widow pensions were needed while only about 22.9% demanded food security scheme to make the lives of elderly better.
Coming to the challenges faced by them in enjoying independence or autonomy, 55.8% termed the generation gap to be a major restrictive feature, while 44.8% said fast changing socio-economic and demographic scenario posed a major challenge. About 37% found lack of modern technology to be a big hurdle.
Many face discrimination, abuse, harassment
The survey also revealed how these challenges often contribute to discrimination which about 54% of all elderly said they faced due to their age.
It also highlighted the worrisome phenomenon of elder abuse, mistreatment or harassment which an alarming 52.4% of all respondents said they faced in their old age.
While a vast majority of 63.7% faced neglect or disrespect, about 42.3% faced domestic violence while about 60.1% said they were being harassed. The reasons for such ill-treatment ranged from their being considered a burden (63.1%), unable to take care of themselves (59.2%), properly related issues (55%) to even generation gap (41.2%).
Most elderly remain deprived of palliative care
The survey also revealed that most elderly (62.1%) were not getting any long-term palliative care. Out of this segment, 52.4% said they primarily needed traditional family support, while 29% sought maintenance to meet their old age requirements; and 13.9% demanded better healthcare facilities and caregiving services in old age. About 4.4% also spoke of the need for care and support like housing and counselling as their most important needs.
Many of the elderly were found to be unaware about the status of policy framework and support and services for them. Only about 28.6% were found aware of laws and schemes for their welfare while the rest said they had no or very little knowledge about the provisions or schemes meant for them.
Care of bedridden, elderly patients
An interesting finding of the survey is that it reveals how the number of bedridden patients is increasing with the growing number of elderly and rising life expectancy. A good 27.24 % of the respondents said they had bedridden or ailing family members. Also, about a third of these respondents said the average period of bedridden status of such family members was over three years while in the case of another 29% the period ranged from one to three years.
Almost two-thirds (64.12%) of the respondents said lonelinesss, marginalisation or isolation was the most critical issue facing the bedridden. Another 12.58% said lack of proper care due to the busy lifestyle of family members and other such reasons was the most critical issue faced by the bedridden. Lack of hygiene and cleanliness was also seen by many of the elderly (11.45%) as a major problem faced by the bedridden.
Bedridden seek entertainment, counselling
On what constituted the best palliative care for the bedridden or elderly patients, about 68% said organising entertainment activities like music or dance would be of immense help. This apart, 12.45% spoke of counselling and 11.88% of interaction with them as the best palliative care. Some also suggested improving the quality of these services.
Agewell Foundation noted that “during the survey, many interviewers observed that older persons who are bedridden or suffering from some old age related diseases for long time, feel very happy when they recall their past life experience and memorable moments”.