Outline

• Background−Emerging research debate on long-term care in SSA• Realities of care−‘Informal’ family care−Formal care• Dominant policy discourses• Human rights implications

BACKGROUND

Emerging research focus on long-term care for older persons in SSA

• Small, but rising number of studies on aspects of long-term care for dependent older people

• Within context of intensifying research debate on ageing in SSA, and evidence of:

−Substantial prevalence of NCD, functional impairment high level of care need (on a par with ‘North’)

−Rapid social change: urbanization, globalization

Emerging research focus on long-term care for older persons in SSA

• Informal care

−Pathways to care

−Care arrangements, patterns, content

−Adequacy of care

− Impacts on caregiver and recipient

Emerging research focus on long-term care for older persons in SSA

• Formal care (institutional, community-, home-based)

−Contexts of, pathways to care

−Well-being of care-recipients

−Practice focused: toward improving quality

• Mainly in SA (only SSA country with substantial, long established formal care sector)

REALITIES OF LONG-TERM CARE

Family care: patterns, arrangements

• Long-term care overwhelmingly provided by families:

−Close kin, mainly women

−Substantial share of carers are old themselves

−Role of young grandchildren

• Rationales:

− Long-term reciprocity

−Exchange (incl. for material benefit)

−Necessity (lack of alternative), beneficence

Family care: adequacy

Substantial unmet need and care inadequacies esp. in contexts of poverty:

• Large % lacks a carer (20% Nigeria; KZN, South Africa)

• Severely compromised care quality:

−Family carers lack skills, financial resources, time

“Mama is not recovering well from the stroke. I know that there are ways of rubbing mama’s affected areas on her body that can improve her condition, but I don’t know how to do it and I don’t have the money to take her to the hospital for them to do it there”

“The care I give mama is not fully adequate. But I cannot devote all my time to her. I also have my life to live. If I don’t look after my shop how can I make progress in life?...”

“Mama needs more attention than I can give. I take care of my little children, myself and my husband… By the time I do all my household chores and I am tired, there is little or no strength in me to clean mama’s room thoroughly” (Voices of carers, Nigeria)

Family care: impacts

• On carer:

−Stress, lost economic opportunities, sense of entrapment

• On care recipient:

−Basic care needs not met

− Loss of dignity

−Compromised autonomy and independence

“….When she is at her shop I do not have company. And I might need help with going to the toilet but…I have to endure the situation until she comes back. Sometimes I would have started urinating on myself before I get help to go to the toilet” (Care-recipient, Nigeria)

“Look at me, I have always been a clean person, but look at the filthy surrounding in which I sit and sleep. Can you perceive the odour of urine? It’s because my daughter-in-law last washed the bed sheets a few days ago. This makes me feel very bad” (Care-recipient, Nigeria)

“It is when it is convenient for her that she does things for me... My niece determines too many things about me..In my own house I cannot determine what I eat. I feel sad because decisions on my food and on when I have my bath are taken for me. Even when I can have my meal is determined by others” (Care-recipient, Nigeria)

Family care inadequacies and detrimental impacts

• Arise within contexts of:

– Low, insecure incomes– Low education, lack of access to information and training– Inadequate housing– Lack/high costs of basic amenities (water, electricity,

sanitation)– Poor, costly basic services (transport, health, education)

Formal care: patterns, arrangements

• Clearly emerging need/demand for formal care services

• Considerable ‘organic’ expansion of such services:

−Private for profit: emerging ‘industry’ (home based/residential)

−Charitable (institutional or community based)

−E.g.Kenya: 16 residential facilities (most founded post 2000)

Formal care: adequacy

• Strong indications of compromised care quality in residential care facilities:

−Poor infrastructure−Poor amenities (sanitation, water, electricity, transport)− Lack of relevant care skills, expertise among staff− Limited number of personnel− Lack of essential supplies (nutrition, diapers)

• Above all: lack of coordination and regulatory oversight

DOMINANT POLICY DISCOURSES

Long-term care in SSA policy frameworks and debate

• Recent growth in:−Number of national, regional policy frameworks on ageing−Policy and public debate

• Care seen as ‘family issue’ and responsibility• Key concerns:−Encouraging, supporting families to (re-) embrace their

‘traditional’ care role in the face of social change −Discouraging formal, esp. institutional care provision

Long-term care in SSA policy frameworks and debate

“We [should] delete the idea of establishing residential homes [for the elderly]. That is ‘un-African’ and it goes against our culture..”(Senate debate March 2014, Kenya)

Long-term care in SSA policy frameworks and debate

• AU Plan of Action on Ageing urges Member States to:

−Enact legal provisions that promote and strengthen the role of family and community in the care of older people

− Learn from traditional family values and norms to inform legislation about…care of older persons

−Discourage the institutionalization of older people and retain the cultural respect for older people

• Echoed in national ageing policies (exception SA)

Long-term care in SSA policy frameworks and debate

Major gaps:

• No recognition of present realities of care:

−Scope, gravity of inadequacies and detrimental impacts on family care-recipients and –givers

−Real, growing need/demand for, and growth of, formal care services

−Apparent inadequacies in formal care provision

HUMAN RIGHTSIMPLICATIONS

Four key implications

1. Human rights violations

• Present informal and formal long-term care arrangements in SSA, esp. in contexts of poverty and broad capacity gaps, entail violations of a spectrum of older people’s rights:

−To dignity

−To independent living and autonomy

−To self-fulfillment

−To participation

2. Lacking recognition of long-term care as human rights issue in SSA policy discourse

• Dominant policy frameworks/debate do not recognise long-term care as a rights issue that State has obligation to address

3. Circumscribed stipulations on long-term care in SSA human rights frameworks

• Extant national (e.g. Constitutions) and regional (Draft AU Protocol) human rights instruments do address care – but only in circumscribed terms

• Do not capture:

−Plurality of rights to be safeguarded in relation to care at family and formal levels

−Explicit need for State oversight and regulation

“The state shall take measures to ensure the rights of older persons are recognised to… receive reasonable care and assistance from their families and the State “(Article 57; Constitution of Kenya)

State Parties shall:

• ‘Identify, promote and strengthen traditional support systems...to enhance the ability of families and communities to care for older family members’

• ‘Enact or review legislation that ensures that residential care is optional for older persons’

• ‘Ensure older persons in residential care facilities are provided with care that meets national minimum standards’

(Draft AU Protocol on the Rights of Older Persons in Africa, articles 11, 12)

4. Need for long-term care element in new legal international instrument

• Need for explicit element on older persons’ rights in relation to long-term care as part of new legal international instrument, to:

−Augment, complement extant national and regional human rights instruments in SSA

−Help promote recognition of care as rights issue in SSA policy frameworks and debates

4. Need for long-term care element in new legal international instrument

• AU Member States, in their Africa Common Position on the Rights of Older Persons (2013) explicitly call for the development of a new legal international instrument

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