Caregiving and support for older persons

Learning and thoughts on Caregiving and Support for Older Persons at the Open-ended Working Group #OEWG14, UN headquarters, New York, 20th to 22nd May'24. 

Hira Mehta, official Spokesperson of Silver Inning Foundation at 14th OEWG, UN HQ, NYC, May'24 

Hira Mehta attended an in-person CSO Consultation on the implementation of Human Rights Council resolution on care and support during #OEWG14 on Ageing Rights for older persons (9 am-12 pm, 23 May 2024) at the UN Secretariat Building, UNHQ, New York as representative of Silver Inning Foundation. The meeting was chaired by Asako Hattori and moderated by Martyna Balciunaite, UN official. The topic of discussions were (1) what human rights are relevant for older persons as caregivers and receivers of care and support and (2) what are the specific challenges and rights issues faced by older persons facing discrimination in the context of providing or receiving care and support (older women, older persons with disability, older persons belonging to minorities, etc).

At this meeting, Hira spoke about Dementia and Alzheimer’s and grandparenting responsibilities, especially for women.

Most agreed with her thought that, grandparenting should be a choice and not an expected support. In urban India, the extended family living under one roof is not a given anymore and today's nuclear structure, means more expectations from older persons. In our culture, the role of the grandparent is perceived as a role to teach traditions, moral values, religious values and overseeing their well-being and more. Some older persons find themselves moving abroad every six months to look after the grand kids. While some easily adapt to a new place and society, others find it difficult to leave the old ways and find it difficult to adjust. The choice is often not given and that could cause a great deal of issues for older persons in the household.

Speaking about caregiving, Hira suggested that dementia be included in the disability package of health and health services as an essential, for providing comprehensive support, ensuring access to necessary medical and social services and alleviating the financial burden on families affected by dementia. Dementia causes significant cognitive impairment, affecting memory, reasoning, communication, and the ability to perform daily tasks. This aligns with the definition of disability as a condition that substantially limits one or more major life activities. She also mentioned that most of the time families treat it as old age issues and are unable to recognize it as dementia. Some are not willing to accept the fact and therefore early diagnose takes a back seat resulting in delay of treatment. Treating it as a disability will not only improve the quality of life for those with dementia, but also support the family and caregivers to deal with it effectively. Cost of care is high and dementia care will be expensive, with regard to medical treatments, long-term care services and out-of-pocket expenses. As dementia progresses, individuals will experience functional decline and require assistance with activities of daily living, such as bathing, dressing, eating, and managing medications. Individuals with dementia require regular attention and medical care to manage symptoms, monitor progression and treat comorbidity conditions. Long-term care is involved and many individuals with dementia will eventually need long-term care services, such as in-home care, adult day programs, assisted living, or nursing home care. Therefore, Hira requested that dementia be part of the disability package of health and health services, so that integrating it into disability packages will ensure that persons with dementia receive the support and care they need.

Irrespective of health and health services, governments and authorities should conduct public awareness campaigns to educate the public about dementia. It would help raise awareness about dementia, reduce stigma, and promote advocacy for better care and support services. Governments and health organizations also should develop policies that explicitly recognize dementia as a disability and outline the entitlements and services available. The society and community also need to support by expanding community-based support groups, adult day care centres and care programs.

UN 14th OEWG May'24 

One of the sharing that hit Hira hard at this meeting, was the sharing of a lady from the Far East. Belonging to the LGBTQ+ community, she talked about the stigma and discrimination, especially if institutionalized in the past or after having overcome mental issues, including anxiety, depression and suicidal ideation. Support groups are limited in number and despite increasing visibility and acceptance world over, social stigma and discrimination continue to impact her well-being. She called for attention towards continued efforts needed to ensure comprehensive legal protections, improve access to competent healthcare and combat social stigma and discrimination.

 Assisted living or Elder homes, is an option and respite for family caregivers, who need assistance during times of illness or travel or their own job constraints. Family members may get peace of mind knowing that their loved ones are receiving professional care and support in a safe and nurturing environment. Sadly, sometimes, older persons are not questioned about their preferences. Besides, older persons, may become vulnerable to exploitation, abuse, or neglect by caregivers and sometimes financially exploited too, if family does not pay attention or visit often enough. The 24/7 care by trained staff, helps ensure that older persons with complex medical needs or mobility issues receive the assistance they require. Dependence on caregivers for activities of daily living, the lack of mental stimulation and engagement in institutional settings, however, can accelerate cognitive decline, particularly for individuals with dementia or cognitive impairments. Older persons are at increased risk of experiencing depression, anxiety and other mental health issues with the loss of personal belongings and comfort, independence, social isolation and changes in assisted living environment with the limited privacy and loss of personal space. Financial burdens, particularly in places where long-term care services are expensive or not covered by insurance, often become the reason for home treatments for some families. High costs of care whether at home or assisted living option, can deplete the savings and assets, impacting financial status of the family. While institutionalization may be necessary for some older persons who require intensive care or support, it can have significant implications on mental health and quality of life.

In conclusion, caregiving is an essential aspect of an older person’s life cycle and therefore, it is necessary to continue raising awareness about the realities of caregiving and its cost. Advocating for policies that provide adequate support and resources, whether it is through community programs, government initiatives, or individual acts of kindness is important. There is a need to create a more compassionate and supportive environment, to ensure that both caregivers and care recipients receive the required assistance and resources.

~  Hira Mehta | Author | Podcaster | Motivational Speaker | Soft Skills Trainer