Belo Horizonte’s pioneering community care programme for older people
By Peter Lloyd-Sherlock and Karla Giacomin
With contributions from the IHOB Belo Horizonte research team (Janaina Aredes, Poliana Carvalho, Quesia Ferreira, Joselia Firmo, Lucas Sempe).
PMC: a different kind of intervention for older people.
Since 2011, the Brazilian city of Belo Horizonte has been running an innovative scheme to support care-dependent older people in disadvantaged communities: Programa Maior Cuidado (PMC – Older Person’s Care Programme). The city government had been concerned about the limited capacity and sometimes very low quality of care provided by local long-term care facilities and by evidence of rapidly growing numbers of care-dependent older people living in poor neighbourhoods. Consequently, it was keen to develop a new model of community-based health and social care for these older people (Sartini and Correia, 2011).
From the outset, PMC has had a number of key features that set it apart from other community-based health and social care programmes for older people. It was developed jointly by the municipal departments of health and of social assistance, and they continue to run it in partnership. This inter-sectoral approach has been almost unheard of in Latin America, leading to service fragmentation and an abrupt disconnect between health and social care.
Local health and social assistance centres have joint teams, which meet monthly to screen new potential participants and to review existing cases. A key PMC philosophy is to consider the wider circumstances of older people and their families; not just the older person’s health and functional status. This is especially relevant in the communities where PMC operates, where many families are facing multiple problems and deprivations. Their difficult circumstances affect the chances that older people will get good quality care at home and require support from social assistants as well as health workers.
A second unique element of PMC is that participating families receive support from trained PMC carers, who are recruited from similar communities and are paid a basic wage. PMC carers work 40 hours a week, caring for between one and three families. Each family receives between 10 and 40 hours of care support a week, depending on the level of need of the older person and the family’s wider situation. PMC carers have a uniform and are jointly supervised by staff from the local health and social assistance centres.
PMC carers are not expected to completely replace family care responsibility for dependent relatives. Instead, the focus is on providing primary carers some respite from what is often an exhausting 24/7 activity. At the same time, PMC carers are expected to work with family members to build their own care skills and competence. Together with the older person, the PMC carer and family agree a care plan and try to get all household members involved. As well as providing daily support, PMC carers monitor the situation of the older person and report back to the inter-sectoral case reviews.
PMC before the COVID-19 pandemic.
PMC was initially rolled out in a selection of Belo Horizonte’s poorer neighbourhoods, covering 53 health centres, employing 130 PMC carers (mostly women) and reaching 550 families. Between 2011 and 2018 the number of PMC families increased, reaching 735. Each year, around 200 families would leave PMC, most frequently because the older person had died or for reasons such as their families retake care or more exceptionally their entry into a long-term care facility. They would be replaced by new families from a waiting list of applicants.
During PMC’s early years, there were anecdotal reports that the scheme was operating effectively and was very popular with older people and their family carers. This encouraged us to look more closely at PMC in 2018 as part of an MRC/Brazil-funded project[1]. We were under no illusions that working with disadvantaged families in poor and sometimes violent neighbourhoods could not be easy. We also knew, from past experience, that developing effective partnerships across different government agencies was by no means simple.
We ran a series of workshops with health and social care workers involved in PMC, as well as with lay carers. Their views about PMC were overwhelmingly positive. Comments included:
“There was a woman who used to keep all sorts of rubbish in her hair –cigarette ends, bits of paper, little packets of food. Once a PMC carer started to visit her, she started to bathe herself more often and take more interest in her appearance… She had a violent life and the nephew she lived with was a drug user”.
“A typical case is an older woman who needs a lot of support and lives with her husband who is also quite frail. They weren’t in a position to look after themselves properly. Before they joined PMC she was admitted into hospital several times, mainly due to dehydration. PMC can prevent these unnecessary hospital admissions because the PMC carer can intervene sooner. They get in touch with the health centre which can then deal with the problem without anyone needing to be hospitalised. I think that woman would be dead by now if she weren’t in PMC”.
“Older people often develop a close bond with their PMC carer. This means that they sometimes share information with this person that they would avoid mentioning to a doctor. This really helps the people in the health centre to ensure they are OK”.
“PMC isn’t just about care for the older person: it really helps their families. And in some of these families, it’s a case of one older person caring for another one”.
“The daughter of one older woman told me that now they are in PMC she has time to wash her own clothes and do some things for herself. Before that, she didn’t have time for anything”.
We also conducted a number of interviews with older people and families participating in PMC. Again, these were overwhelmingly positive. For example, a 92 year-old man who had multiple chronic health conditions and had been hospitalised on several occasions for failing to manage them commented that:
“She comes every day in the week and stays with me for two hours… She’s with me the whole time, keeps an eye on me and chats with me. She helps me to have a bath and keeps me entertained when I need it.”
His daughter and main family carer added that
“The PMC carer sets up his oxygen supply and stays with him chatting about this and that… She’s always on the look-out in case there is anything different about him. She notices little things and then she’ll tell me: “Look, there must be something going on with him. I’ll have word with the people at the health centre.”
Our evaluation of PMC is ongoing, but we have also been able to carry out quantitative analysis about how the scheme affects patterns of health service use. This analysis is based on comparisons of data for PMC families and data for other older people from the city government’s Department of Health. Applying propensity score matching analysis to control for age, sex and socio-economic status, older people in PMC families are less likely to make emergency visits to health centres and more likely to make planned visits. A significantly higher proportion of health centre visits by older people in PMC were for rehabilitation and a significantly lower proportion for conditions such as uncontrolled hypertension[2]. Our work on other effects of PMC is ongoing, but the findings we have so far indicate that PMC is effective at preventing acute health episodes and in supporting older people’s recovery when these episodes still occur.
Challenges and limitations of PMC before the COVID-19 pandemic.
Although our findings indicated many positive effects of PMC on older people as well as their families, our research found that the scheme was not without problems. As is the case in almost all interventions that include different government agencies, communication and coordination was not always perfect. For example, there were sometimes disagreements about the suitability of PMC carers to provide more complex care support, such as assisting with intubated feeding. Although the jointly monthly case review meetings usually worked well, there were sometimes challenges in linking into other parts of the health system. We also found some weaknesses in record keeping, a lack of documentation establishing clear roles and responsibilities for the various agencies, and inconsistent data sharing.
Sometimes the difficult social contexts in which PMC operated limited its potential effectiveness. Family members were often dealing with a wide range of challenges and were not always predisposed to care for older relatives, even with the support and encouragement of PMC carers. One informant commented:
“There’s a woman with a history of frequent falls. She’s blind and has Parkinson’s. She lives with her children, but they are out all day. And, anyway, the children see having falls as just normal, ‘an old age thing’. They have no idea about what it means to care for an older person”.
Sometimes families had a confused understanding of the scheme and the role of PMC carers, such as assuming they were health professionals or, conversely, were intended to perform general housework. Also, some vulnerable older people lived alone or with people who were not present during much of the day. Since a key element of PMC is working with family carers, this begged the question whether these cases were eligible for inclusion or whether a different scheme was needed for their specific situation.
A related issue was the policy of PMC to periodically rotate carers, so that they did not become too close to a particular family. This was often very unpopular with older people. Our 92 year-old informant commented:
“My first PMC carer stayed with me for a year and four months. I adored her. There will never be another carer like her [cries]”.
His daughter added that not all carers were as good as others, a point also made by other informants, but noted that there were mechanisms to deal with this issue:
“One carer spent more time on her phone than paying attention to my father. She didn’t stay with him for long, because they quickly kicked her out of the programme. I think they must have received complaints from other families”.
A more general concern expressed by PMC carers, as well as health and social workers was that the capacity of the scheme to include families remained small relative to the local need. This led to long waiting lists and some older people on these lists would die before being enrolled. It also placed considerable pressure on PMC staff to identify the most urgent cases.
Despite these many challenges, our evaluation showed that PMC was generating many benefits and that there was scope to build on this experience. In early 2019 we learned of a separate international study of older people in deprived urban neighbourhoods.[3] This covered a network of cities, including Belo Horizonte, but not neighbourhoods where PMC was then operating. The study collected older people’s views about what they thought would most improve their lives. Without prompting, the most frequent response was that they wished they lived in one of the neighbourhoods where PMC was operating.
In mid-2019, we shared our findings with representatives from the city departments of health and social assistance, as well as other stakeholders. On the basis of these findings, it was decided to substantially extend PMC into new poor neighbourhoods and to carry out some reforms of its operational and information systems. By February 2020 the number of older people included in the programme increased from 524 to 633.
Then COVID-19 hit.
PMC during the pandemic.
The first cases of COVID-19 in Belo Horizonte were reported on 8 March 2020. Like other cities in Brazil, rates of infection were thought to be especially high in more deprived neighbourhoods and older people were at particular risk of COVID-19 mortality. As such, the pandemic posed major challenges for PMC’s continued operation, just at a time as its participants needed it most.
In June and July 2020 we ran a series of informal online discussion panels with PMC carers, as well as health and social assistance staff. Not surprisingly, there was a strong consensus that the previous months had been extremely challenging. Due to risks of infection, most home visits were initially suspended and efforts were made to substitute them with telephone calls and other forms of remote communication. This was far from ideal and some older people struggled to adapt to this new way of doing things, although PMC carers were still able to touch base and share information with family carers. This included keeping families updated about the status of the pandemic, official guidance and general advice, which to some extent reduced their anxiety and uncertainty. Not all home visits were suspended and PMC carers told us they had been given good access to PPE and specific COVID-19 training. This gradually enabled them to increase the number of home visits and several referred to the evident delight of older people when they were finally able to meet again. For those cases where in-person visits were not yet possible, PMC carers mentioned that some older people had grown more comfortable with telephone support and that the conversations were lasting longer and becoming more relaxed. They had heard that some older people would spend the day next to the telephone waiting for the call from PMC.
We have not yet been able to obtain data to allow us to study specific effects of PMC on health service use, as well as COVID-19 infection and mortality during the pandemic. However, the comments from these discussion panels indicate that that the programme was able to adapt to these new challenges and, at the very least, was able to reduce the distress and enhance the mental health of these vulnerable families during a time of crisis. We have been able to observe that record keeping has improved since our evaluation in 2018, although the growth of the scheme has been put on hold. Between February and September 2020 the number of older people assisted, either in person or remotely, each month declined from 633 to 541. In other words, PMC managed to continue supporting 85 per cent of families during the pandemic. Several of the 15 per cent no longer included were older people who had died, either due to COVID-19 or other causes.
Is PMC a model for other cities?
Irrespective of the COVID-19 pandemic, many local and national governments in Brazil as well as other middle-income countries have been looking at how to address a fast-emerging policy challenge. There are growing numbers of older people with care needs, and this includes people living in deprived neighbourhoods. The wishful idea that these needs can usually be met by unsupported carers, as part of a wider context of altruistic, functional family life, is increasingly out of step with reality. Primary health care services have struggled to move away from a long-standing focus on issues like mother and child health or infectious disease control and rarely work in partnership with social work agencies. As a result, growing numbers of dependent older people experience neglect and receive inadequate care. This also leads to pressures on health services due to hospital admissions that might have been avoided.
Popular solutions being assessed or debated include facilitating the establishment of private home care agencies, repurposing primary health care staff and providing dependent older people with cash transfers exclusively used to purchase care from the private sector.[4] We feel that PMC has many advantages over these approaches, due to a number of features that are unusual, if not unique.
First, PMC pays carers a basic wage, rather than relying on community volunteers. Experiences of volunteer carer schemes in countries such as Costa Rica and Thailand show that, though they provide some support, the contributions made by carers are limited and inconsistent (Lloyd-Sherlock et al, 2017). With payment, comes an element of professionalism for PMC carers, with clear roles and responsibilities, including fixed hours and specified roles. And if they under-perform PMC carers will be removed from the programme. There are other examples of schemes in Latin America that train and pay home carers, but these are not usually integrated into wider health and social work teams.
A second point of originality is the intersectorality, which runs through all PMC operations, including joint case review meetings, combined inputs into personal care plans and communication with PMC carers. Rather than focus exclusively on the health and functional status of older people, PMC considers their wider family situations. In many PMC families this situation is far from ideal and requires more holistic forms of support. PMC has been able to sustain an effective partnership between departments of health and social assistance for nearly a decade, spanning three different local government administrations.
Inevitably, a key policy consideration is the value for money offered by schemes such as PMC. Obtaining reliable cost data for the programme is not possible, since many resources are subsumed within wider activities undertaken by health and social work staff. It is clear, however, that the lion’s share of costs comes from the monthly payments to the PMC carers. Many of these carers are the only income-providers for their own families, and so this is far from a wasted investment of public funds.
PMC is not a panacea. Our research to date has not been blind to its imperfections and limitations. Nevertheless, PMC offers a valuable example to other cities in Brazil and beyond. There is a growing body of evidence showing its many beneficial effects on older people, their families, and for the PMC carers. We are continuing to study PMC, both with a view to build on its potential in Belo Horizonte and to provide evidence for other cities.
[1] MR/R024219/1: Improving the effectiveness and efficiency of Health and social care services for vulnerable Older Brazilians (IHOB).
[2] See Appendix 1 (summary of analysis).
[3] https://wp.ufpel.edu.br/placeageproject/en/index-2/
[4] For a recent discussion of these options in a Latin American context, see Cafagna, et al (2019).
REFERENCES
Cafagna G., Aranco N., Ibarrarán P., Oliveri M., Medellín N. And Stampini M. (2019) Age with Care: Long-term Care in Latin America and the Caribbean. Inter-American Development Bank https://publications.iadb.org/en/age-care-long-term-care-latin-america-and-caribbean
P.Lloyd-Sherlock, S.Sasat, F.Morales and A.Pot (2017) “Long-term-care policy in Thailand and Costa Rica and the role of volunteers: Key success factors for development and implementation”. Bulletin of the World Health Organisation 95(11): 774–778.
Sartini CM, Correia AM. Programa Maior Cuidado: qualificando e humanizando o cuidado. Pensar/BH Política Social, 2012;31:10-13.
ALL POSTS