Parents or foster parents normally provide care for babies and children, but people of any age may need care if they are dying of a terminal illness, or living with a condition that makes them physically, cognitively or psychologically dependent on others. Frail older people often need support. The degree of care may range from occasional help with tasks such as shopping and cleaning, to personal care such as assistance with eating, showering and toileting. It usually encompasses both physical and emotional aid, and may involve overseeing a person’s general welfare as well as responding to loneliness and social isolation. Care can be provided by paid workers or by friends or family. Many people both give and receive care at different stages in their lives.
Ideas about what constitutes the best care for a person have changed, influenced by each situation and different theories. Though families have usually been the first to help when care is needed, institutional care was promoted during most of the 20th century for some people, notably those experiencing mental illness or intellectual disability, and frail older people needing support with daily tasks.
After the Second World War, consumer organisations of disabled and elderly people and their families emerged. Their lobbying brought about significant changes, including the introduction of ‘community care’ – integrating previously institutionalised people into their local communities. There was also increased support for elderly people to stay in their own homes as long as possible, rather than entering a rest home – a policy called ‘ageing in place’. This recognised the preference of older people to maintain whatever level of independence they could achieve. Although a range of support services was provided, much of the responsibility for this care fell on family members.
At the time of the 2013 census, over 490,000 New Zealanders were providing unpaid informal care for someone. Carers are more likely to be women because of social expectations about gender roles. It is usually mothers who care for disabled children and young adults. Daughters often take responsibility for frail older parents. Because women have a longer life expectancy, wives are also more likely to end up caring for husbands. Many older people care for other older people, so it is not just a case of the young looking after the old.
People look after family and friends for a range of reasons: love and long association, a sense of duty (for example, the marriage vow to care for the partner in sickness and in health), a belief that it is what others expect, a fear that the person will deteriorate if they go into an institution. They may have no choice if the person in need is a child, or a parent who does not qualify for residential care.
People may wish to care but not realise what is involved until they are committed, and later come to resent the burden. Sometimes this can lead to destructive behaviour, including abuse, and a deteriorating relationship with the person being cared for and other family members. To care for someone effectively, the carer has to be able to cope with the demands of the situation and maintain a positive relationship with the person being cared for. Carers often need a number of different forms of support.
Although a person with dementia can be difficult to care for, there are rewards. One woman said of her husband, ‘he’s lovely just the same. I sit on the couch there with him and never a night goes by that he doesn’t put his arm around me and … we just sit and watch TV or something like that.’1 The importance of a relationship continues in many cases – another woman said, ‘my husband is happy at home and I am happy to have him at home … seeing as he’s my husband and I can look after him I would rather keep him as long as I can.’2
If a carer interrupts their paid work to provide care, this can have career and financial implications for them. Often carers do not get support from friends and other family members because of misunderstandings about the seriousness of the situation, geographical or emotional distance, or feelings such as fear or distaste about the condition or illness.
When caregivers such as those caring for a child with complex needs or a confused elderly relative are put under great pressure, they can become exhausted or depressed. This may lead them to withdraw from social activities and become isolated.
Caring for someone at home is often an all-day, every-day commitment. Carers can apply for a carer support subsidy, which first requires a needs assessment. They are then given a number of days of respite care per year when they can take a break, either as occasional hours or in a large block. The subsidy helps cover the cost of a paid carer during that time. This can include payment for care by neighbours or other family members who are not living in the same home. It can also pay for short-term care in a rest home or hospital.
Before old-age pensions were introduced in 1898, elderly people who became ill or unable to work relied on family support or charity. The colony had attracted a large number of single male immigrants, and the gender imbalance in the population meant that many never married. By 1900 there were numerous elderly men without family. Those who could no longer work or live independently often became residents of benevolent institutions, set up by provincial charitable aid boards and religious institutions from the 1860s. These were often grim, uncomfortable places. They had infirmaries and cancer wards, but inmates suffering from dementia were sent to mental institutions.
After the First World War, life for frail older people in benevolent institutions became more strictly regulated. Inmates were required to surrender all belongings, abstain from alcohol, refrain from using obscene language and spitting on the floor, and bathe at least once a week. However, elderly men in particular often found ways of obtaining liquor – one of the few comforts left to them.
From the early 20th century, homes for older people were more attractive. Some were set up for former soldiers as a ‘reward’ for their service – for instance the Ranfurly Veterans’ Home in Auckland, which opened in 1903. More church-run and private homes emerged after the Second World War, when women began to outnumber men in older age groups. The number of older people who lived in rest homes increased. By the mid-1970s New Zealand had one of the highest rates of rest-home residency in the Western world.
Older people were keen to remain in their own homes and maintain their connections with their families and communities. From the 1980s they received more support to continue living in their own homes. This included the provision of Meals on Wheels, mobility aids and household help by district health boards. Private providers of home-care services also emerged. The proportion of people over 85 who lived at home rather than in residential care increased.
Various strategies were developed to help older people remain in their own homes for as long as possible. These included 'Ageing in Place' and the 'Positive Ageing Strategy', which were introduced in 2001. Policy with respect to older people increased in importance as the New Zealand population aged. Between 1994 and 2011 the number of people over 65 increased by 55%. The number of people over 80 increased by 80% between 1994 and 2014, and the over-85 age group is now the fastest growing in New Zealand.
Some older people who can afford it choose to live in retirement villages in small units or flats, with a range of optional support services. This helps many to remain independent for longer. It is also a useful strategy if one partner needs more support and care than the other and they want to continue to live together. Other couples choose to stay in their own homes and access home support.
Despite the policy of ‘ageing in place’, those who become unable to care for themselves often need to move to a rest home eventually. Accessing a Residential Care Subsidy for rest home care depends on an individual's health, income and assets. While those in residential care in 2013 were overwhelmingly over 80 years old, only 15% of people aged 80 and over were living in residential care. The majority of those doing so were women.
People with age-related dementias such as Alzheimer’s disease are cared for at home, in day-care centres, rest homes, specialist dementia units or psychogeriatric hospitals, depending on the severity of their condition. In 2005 about 70% of people with dementia were cared for in their own homes, while 60–70% of people living in residential facilities had some form of dementia.
In 2016 some 62,287 New Zealanders had dementia. About 70% of them were cared for at home, with the remainder living in residential care.1
The incidence of dementia will increase as the population ages. It is estimated that over 170,000 New Zealanders will have dementia by 2050.2
In the 2010s the provision of rest homes was a deregulated and growing industry. While some rest homes were run by churches and charitable trusts, many of the country's rest homes (669 in 2016) were owned by overseas companies which worked to make profits for their shareholders. All rest homes have to be licensed, are subject to audit by the Ministry of Health, and are required to meet defined standards of care.
While rest homes are used as a general category of care for older people outside their homes, this care takes the form of rest-home care, long-term hospital care, dementia care, and psychogeriatric care. Some residential facilities for older people provide all these forms of care, while others offer only some of them.
Commercially operated and non-governmental residential facilities for older people receive significant payments from district health boards (funded by the Ministry of Health) for the care of older people who are not able to pay for their own care. Whether for profit or not for profit, the organisations providing these forms of care are effectively subsidised by the government.
Access to subsidised rest-home care always involves needs assessments, carried out by local Needs Assessment and Service Coordination service (NASC) agencies, which are contracted to do these assessments by the Ministry of Health. Needs assessment is followed by assessment of income and assets in order to determine levels of support for subsidised rest-home care.
Assessment of assets for those with partners excludes consideration of the family home, a car and pre-paid funeral expenses. In the 2010s the cost of rest-home care was typically over $1,000 a week, depending on the level of care needed.
People entering residential care do not automatically receive a Rest Home Subsidy. Assessors look at a person’s mobility, health problems, family and other support networks, and ability to dress themselves, manage personal hygiene, and run a household. If their needs are assessed as ‘high’ or ‘very high’, long-term residential care is recommended; otherwise they are offered support to remain in their own home.
Paid carers are mostly women. Rest homes employed professionally qualified staff, including registered nurses and occupational therapists. While most of the caregiving workforce do not have professional nursing qualifications, larger commercial rest homes often run training schemes for staff.
In 2012 Kristine Bartlett, who had been working for 20 years in a residential facility for older people, lodged an equal pay claim with the Employment Relations Authority through her union, the Service and Food Workers Union. They argued that her low rate of pay was a consequence of this form of work being mainly done by women and in breach of the Equal Pay Act 1972. The claim was referred to the Employment Court, which ruled in the claimants’ favour in 2013. Terranova, Bartlett's employer, took the case to the Court of Appeal, which upheld her claim in 2014. The Supreme Court declined to hear a further appeal by Terra Nova.
In April 2017, after 20 months of negotiation between the government and E tū, a union for caregivers, a settlement was reached on equal pay for aged caregivers. This included increases between 2017 and 2021 in the hourly rates paid to caregivers who had been on the minimum wage. These increases were funded from Vote Health and allocations to the Accident Compensation Corporation.
The 2013 census revealed that 5% of people aged 65 or over lived in residential care facilities, with more than half of this group aged over 85. In contrast, 92% lived in private homes.
People entering rest homes are increasingly older and with high levels of disability. This means that there is a greater need for specialist rest home care. There is also an increased need for housing specially designed for older people in which they can live independently with some support.
In the 19th century, terminally ill people were generally cared for at home. People suffering from advanced cancer or tuberculosis were not welcome in hospitals, which wanted to be seen as places that cured sickness. Some cancer patients without family support ended up in institutions for the elderly.
The first New Zealand home specifically for the terminally ill was St Joseph’s Home for Incurables in Buckle Street, Wellington, which opened in 1899. Run by the Sisters of Compassion, the home cared for the dying, and for chronically ill and disabled people of all ages. Nursing and religious consolation were part of the care offered. Another Roman Catholic order, the Sisters of Mercy, established hospice wards for the dying adjacent to Mater Misericordiae Hospital in Auckland in 1952. Like similar establishments in other countries, these anticipated the modern hospice movement, which developed in the 1960s.
The first modern hospice, St Christopher’s Hospice, opened in London in 1967. Using an interdisciplinary approach, it provided a blend of medical, nursing, social and spiritual care, and comfort for the dying, acknowledging the importance of family and friends in the process. Unlike older hospices, which were widely seen as places where people went to die, modern hospices emphasised maintaining and enhancing quality of life for the dying, while supporting their families. They also confronted the widespread fear of dying and attempted to dispel some of the myths and mysteries surrounding it. New Zealand’s first hospice, Mary Potter Hospice, was opened in Wellington in 1979 by a Catholic order, the Little Company of Mary.
Hospices were subsequently established around New Zealand, not all with a religious basis. At first hospices emphasised inpatient care, but they later began offering home-based services. Some hospices now offer specialist services for children and young people suffering from life-limiting illnesses.
Coralee Grantham's husband Mark was diagnosed with a brain tumour in 2012 and died 16 months later at 52. During that time the Mary Potter Hospice was a bit like a revolving door for Mark. Time in the hospice was often focused on getting him well enough to go home. Coralee said that ‘I really felt he was happy when he was there and it became a bit like a home away from home. You can even bring in your animals. It’s like a calm oasis in the midst of all this turmoil that’s going on in your life.’1
In 1986 a national coordinating body, Hospice New Zealand, was established. In 2016 there were 35 hospice services throughout New Zealand. Hospice care is partly funded by the government, but hospices rely heavily on public donations.
The term palliative care, coined in 1975, describes the kind of holistic care offered in hospices. It includes nursing, symptom control, physiotherapy and counselling. Central to it is the idea that pain relief for the dying is both a science and an art, and needs to take into account each person’s individual circumstances, including their cultural preferences. It is now offered through hospitals as well as hospices.
In the mid-19th century, the care of children and adults with physical disabilities such as cerebral palsy, intellectual disabilities or mental illnesses was considered the responsibility of family. Those who were not seriously impaired often went to school or work, or helped at home. Because medical treatments of coexisting conditions such as epilepsy were rudimentary or non-existent, many people with serious disability had short life expectancies.
Psychiatric illness and intellectual disabilities were not officially acknowledged to be different conditions until 1911. From the 1860s affected people were often ‘put away’ permanently in asylums, which were deliberately built in remote areas. In the early 20th century, when the pseudo-science of eugenics became fashionable, the belief that intellectual disability was hereditary was common. It became government policy to segregate those defined as 'intellectually handicapped', to prevent them having children and to control disruptive behaviour.
Conditions in hospitals for the people with intellectual disability were anything but home-like. One resident of Templeton from the late 1920s remembers, ‘There were 106 in the dormitory and they only had four windows, just that much open so you couldn’t climb out … I didn’t have any clothes of my own, not even underclothes. I didn’t have anything of my own.’1
Residential schools were established to teach work skills to children with mild disability, such as a boys’ school at Ōtekaieke near Ōamaru which opened in 1908, and a girls’ school at Richmond near Nelson which opened in 1916. For more serious cases, psychopaedic units were set up, notably Stoke Villas at Nelson Mental Hospital in 1922, Templeton near Christchurch in 1929 and Levin Training Farm and Colony in 1945. Parents were pressured to put their children into residential care, on the grounds that this was better both for them and for other family members. Those who chose to keep children with intellectual disabilities at home received no support services. Adults with intellectual disabilities who had grown up at home were often sent to mental or psychopaedic hospitals after one or both parents died or became incapable of looking after them.
In the 19th century adults with serious disability who were without family support were often admitted to benevolent institutions for the elderly poor. Later, a few homes were established specifically for this group, such as the Elizabeth Knox Home and Hospital in Auckland, which opened in 1914.
There was greater community acceptance of physically disabled people. If the disability had occurred as the result of an accident or infectious disease, both of which were common in the 19th century, it tended to be viewed sympathetically. Large-scale events such as the First World War, which permanently injured many young men, and the polio epidemics of the 1920s, 1930s and 1940s, which afflicted children in particular, heightened public awareness.
In the 1960s the governor-general’s wife was shocked to see many young disabled people in geriatric wards. She initiated the Laura Fergusson Trust in 1967. In the following decade, trust homes were founded in Auckland, Wellington and Christchurch. In the 21st century the trust continued to provide residential facilities, but also supported-living options, with a strong emphasis on rehabilitation.
Some institutions concentrated on integrating people into everyday life. Residential schools were established for blind and deaf children in the late 19th century to teach them literacy and occupational skills. After the First World War there was state-funded medical treatment and rehabilitation for injured soldiers in convalescent homes and hospitals.
The Crippled Children's Society (now CCS Disability Action), set up in 1935 to support physically disabled children, established the Wilson residential home in Auckland. From 1940 it focused on providing services to children in their own homes. From the 1950s local IHC branches established day-care centres, and hostels for short- or long-term care for intellectually handicapped people.
Although some families were apprehensive about community care for their intellectually disabled children, the reality was often a pleasant surprise. One parent recalled, ‘On our first visit to the group home we went to the front door and instead of having somebody go to the office and sign in and then phone over, and somebody else opening the door, we just went up to the door and rang the doorbell… opened the door and said: “May we come in?” and someone said, “The kettle is on.”’2
Apart from these initiatives, there were few support services for disabled people living at home before the 1970s. The Disabled Persons Community Welfare Act 1975 was a landmark piece of legislation, giving practical assistance to disabled people and those looking after them, including loans for motor vehicles and home alterations. From that time, hospital boards began providing a wider range of home aids.
Growing opposition to large institutions amongst professionals and consumer groups led to a policy of deinstitutionalisation. Between the 1980s and early 21st century, nearly all mental hospitals and psychopaedic units such as Templeton and Kimberley (formerly the Levin Training Centre) closed. Some former patients went to live with family. Others lived together as flatmates with support from community organisations and trusts. Seriously physically disabled people were provided with supported-living options by organisations such as the Laura Fergusson Trust.
People with disabilities can receive funding for paid services they need in order to continue living in their own homes through the Home and Community Support programme. People are paid an hourly rate to provide personal services such as showering, dressing, and assistance with eating. These people work for home and community support service organisations that are contracted to provide these services by the Ministry of Health.
In 2013 the government introduced funding for care by parents or other whānau/family members (but not spouses, or civil union or de facto partners) for people aged over 18 with high or very high disability needs who require assistance with things like eating, showering, dressing, cleaning and cooking.
This policy was introduced after the Human Rights Commission argued that prohibiting family members from receiving payments to care for disabled family members was discrimination on the basis of family status, and illegal under the Human Rights Act 1993.
The family member with disabilities is assessed and a service plan is developed for the assistance that is required. Under this scheme, people with disabilities become the employer of family members in their home. The person with the disability is funded to pay the caregiver the minimum wage for their work and also meet the costs of Accident Compensation payments, Kiwisaver contributions and the wages of a substitute carer when family members take leave.
Parents who care at home for adult children with severe physical and intellectual disabilities have contested decisions by the Ministry of Health about the hours for which they are eligible to receive funding. In February 2018 the Court of Appeal ruled that the Ministry of Health should make it easier for parents to apply for funding to care at home for disabled adult children with high or very high needs.3 The court upheld an appeal by a parent and her severely disabled son who argued that the Ministry of Health should fund her, not only for the personal care and household management she provided, but also for the intermittent care her son required 24 hours a day.
Those caring for adult children at home have also asked why the 2017 pay equity settlement for aged-care workers did not apply to parents caring for adult children with severe disabilities. Their rates of pay remained at the minimum wage, while paid carers in rest homes received wage increases.4
As well as being an emotional issue for many people, care is highly political. The NZ Carers Alliance was formed in 2004 to lobby for a national Carers’ Strategy, which was launched in 2008. Its objectives are to provide information and training, enhance financial and respite-care opportunities, and investigate ways of making workplaces more responsive to the needs and skills of unpaid carers.
There are a number of ongoing issues for carers and those receiving care.
In December 2010 the High Court agreed with the Human Rights Tribunal that parents caring for disabled adult children had as much right to be paid as non-family carers. The case followed a complaint by nine families caring for disabled adults that the Ministry of Health's payment policy was discriminatory. The court decision had wide implications for others caring for family members.
Major cities have more support services for people requiring and providing care than small towns and country areas. This inequity is difficult to overcome.
The Carers Alliance believes that the subsidy for families with health and disability needs is inflexible and is not available on an equal basis to all.
It has been claimed that people who have become physically disabled as the result of an accident (and who are therefore covered by ACC) have had better assistance than those disabled from birth or as the result of illness.
Some people are concerned about the lack of appropriate residential facilities for some groups. For example, some severely physically disabled people aged under 65 are still cared for in rest homes. More shared-living units specially designed for people with physical disabilities are being built.
Between 2008 and 2010 the number of complaints about rest homes to the Health and Disability Commissioner increased significantly. Many received intensive media coverage, such as the case of a ‘filthy’ Palmerston North rest home that neglected its residents. Among them was a 103-year-old woman suffering from bedsores, who was tied to her bed, allegedly to help her recover from an injured knee.
Regulation of standards of residential care is contentious. It has been claimed that the general standards for rest-home care, drawn up in 2008, are insufficiently rigorous and poorly monitored. These standards were reviewed in 2017 after complaints from family members about the care received by their frail parents.
Paid home caregivers and rest-home workers look after vulnerable, disabled and sometimes difficult people, but are often unskilled and receive low wages. Consumer New Zealand stated in 2017 that problems in service delivery were mainly due to understaffing and training issues in rest-home facilities.
The ageing of the population as the ‘baby boom’ generation (people born between 1946 and 1973) turns 65, and the subsequent increase in numbers of elderly people with high levels of physical dependency, may result in a shortage of rest homes and dementia units, as well as supported-living options such as retirement villages – and the staff to run them.
Community care has not worked for everyone. Following de-institutionalisation, many former residents of mental and psychopaedic hospitals rehoused in group homes experienced a much better quality of life, and their skills, health and behaviour improved. Some, however, particularly those with high needs, experienced difficulties in coping. A few traditional-style institutions were re-established in the 2000s as a result.
One of the attractions of community care for the government was that it was much less expensive than institutional care. However, the introduction of community care coincided with the contraction of the welfare state from the 1980s. Although the range of services available expanded, the organisations set up to provide them received less government funding. This remains a problem.
The move to community care and ageing in place gives whānau/families prime responsibility for the care of vulnerable older and younger people, many of whom require round-the-clock support. As families become smaller and more dispersed, their potential to provide such care is reduced. Women, traditionally the caregivers, are increasingly in the paid workforce. There is likely to be more demand for options such as day-care, shared-living, sheltered housing and professional home-care services.
There is also a need to integrate how care is provided by a range of people and organisations – whānau/families, voluntary organisations, district health boards, city councils, regional authorities and central government. Different combinations of care from different sources will be required to meet the varied needs of individuals.
A guide for carers – He aratohu mā ngā kaitiaki. Wellington: Ministry of Social Development, 2013.
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Jorgensen, Diane, Parsons, Matthew, Jacobs, Stephen and Arksey, Hilary. 'New Zealand informal caregivers and their unmet needs.' New Zealand Medical Journal 123, no. 1317 (2010).
Kirkman, Allison. ‘Caring “from the duty and the heart”: gendered work and Alzheimer’s disease.' Women’s Studies Journal 24, no. 1 (2011): 2–16.
Kirkman, Allison. ‘Formal and informal care: caring as paid and unpaid labour.’ In Health and society in Aotearoa New Zealand, edited by Kevin Dew and Peter Davis, 113–126. Melbourne: Oxford University Press, 2004.
Opie, Anne, ed. Caring alone: looking after the confused elderly at home. Wellington: Daphne Brasell, 1991.
Tennant, Margaret. ‘Disability in New Zealand: an historical survey.’ New Zealand Journal of Disability Studies 2 (1996): 3–33.
Tennant, Margaret. Paupers and providers: charitable aid in New Zealand. Wellington: Allen & Unwin/Historical Branch, Dept of Internal Affairs, 1989.
The New Zealand carers’ strategy and five-year action plan 2008. Wellington: Ministry of Social Development, 2008.