Elena Moore
On Tuesday we celebrate International Day of Older Persons with a new Government of National Unity (GNU), and it feels timely to call on the new leadership to make a real commitment to supporting older persons living in their homes within our communities.
The long-term care policy in South Africa is to move away from institutional care and support community and family care.
Family care saves the government money, it is more affordable than residential or institutional care. It keeps people in their community where older persons largely want to stay.
But we urge the GNU to be mindful of how current policies that seek to support and facilitate family care of older persons are in fact making it difficult for families to care for older persons.
In our programme Family Care of Older Persons in Southern Africa, we have been working with 100 families in South Africa, who are living in seven different sites across three provinces.
We have been listening to older persons and caregivers, to try and understand their experiences, challenges and to get a better sense of how family care can be supported.
Through this work, we have identified several assumptions that are being made at a policy level about family care of older persons. We believe that these assumptions need to be addressed with evidence so that we can create better policies that support family care, and ultimately older people in our communities.
The first assumption is that family caregivers of older persons are able-bodied and can care. In our sample of 100 older persons who received assistance, 35 of the family caregivers were over 60 years and many were living with a disability or chronic condition and found it very challenging to physically lift and assist their spouse, sibling or family member.
Many other family caregivers couldn’t cope and felt trapped, one man explained how he hadn’t been able to leave the house in four months.
In these cases, family caregivers needed, at the very least, regular, reliable and free home-based care support but this was not available to the vast majority.
The second assumption underlying the idea that family care is possible, is the assumption that family members are available to care.
In a context where employment is so scarce, family members have to prioritise employment over taking time off to care for family members. Whilst some caregivers left their work to care for an elderly relative, others worked around the clock to be both provider and caregiver.
One example that featured regularly was how employed family caregivers feared clinic days, which occurred monthly for some older persons.
Accompanying an older person to the clinic, starting at 5am, travelling a distance, waiting in long queues and only returning home by 4pm, meant that the caregiver had to take a day off work on a monthly basis.
Expecting employed caregivers to do it all is unsustainable. Almost no one could afford to pay for care, there were only three families out of 100 who could afford to pay for a carer.
The third assumption being made is that family members will help and that helping is evidence of good care.
We found that many older persons were unhappy with the quality of care they received as it was not enabling.
For example, Wendy, a 62-year-old woman who had a stroke and needed assistance walking, and was cared for by her husband, explained the frustration she experienced on having to depend on her husband for many activities, especially his desire to take her shopping.
“There was a time that I was in the wheelchair and then he puts the wheelchair in the car, and I would go with to Shoprite to the till and then I’d give him the money but now, recently he doesn’t do that, he wants to go alone then I have to sit in the car, and he goes in. ...
“It's only when it suits him that he takes the wheelchair with me to go into the shops.” Wendy’s household received no external support and she felt isolated.
Several older persons complained about how their well-being was impacted by the different social challenges experienced at a community and household level including crime, substance abuse and domestic violence.
Whilst some older persons in our study expressed how their homes were not safe due to the misuse of alcohol or drugs, they also explained that they didn’t have any other alternative.
Whilst some older persons were looking for more support from social work services, others were seeking safe spaces to rest.
A fourth assumption is that living at home within the community maintains and promotes the well-being of older persons.
Yet the findings indicate that both the built environment and access to services at the community level are not adequately equipped for older persons, especially older persons living with a disability.
The findings show how access to services in relation to mobility (transport, wheelchairs, assisted devices, access to government buildings) and personal care (water, electricity and sanitation, as well as sanitation products) are disabling and constrain family care.
Thembi, a family caregiver living in KZN, described the care work as hard due to the fact that her mother had only sparing access to incontinence products provided by the clinic but also how she didn’t have access to adequate sanitation facilities: “it is hard sometimes she cannot control her bowel and she has an accident, then I will spend the majority of the morning cleaning her bedding. I asked the community health care worker for gloves and adult incontinence products. Sometimes this comes on time, sometimes not. ...
“Also, my mother can no longer go to the outside toilet, physically she just cannot, which means I must find a bucket the perfect height for her on those occasions she feels that she needs to go and does not want to urinate or defecate on the incontinence product.”
Our research found that at some clinics there had been no incontinence products for six months, making the work and cost of family care overbearing.
Access to basic services needs to happen before family care of older persons can begin yet at least 20 percent of older person households in South Africa must make use of a public tap (this increases to 34 percent if living in a rural area), and a further 8 percent of older person households rely on water tankers and/or water from a flowing stream.
This means that at least one in five older person households (21 percent) have to walk between 200m and 1 km to collect water which is the work that happens before personal care can begin. Poor access to water continues to be a feature of under-serviced urban areas and rural life and increases the family care work of older persons.
Supporting family care of older persons is making sure caregivers and older persons have proper access to services, including home-based care and social work services but also adequate sanitation, electricity, water, and transport.
We need to re-centre the role of the GNU in supporting community and family care of older persons by allocating adequate budgets and calling on all provincial departments to come together and review how their policies impact the care of older persons, especially older persons living with disabilities.
* Moore is a professor of sociology in the Department of Sociology at the University of Cape Town.
Cape Times