Caregiver gatherings break new ground: caregiver study days held during last month's national caregivers' week provided hundreds of caregivers around the country with the chance to share ideas and gain new knowledge.

THREE YEARS ago, a member of NZNO's national gerontology section, Jan Featherston, had a vision of holding a national conference for caregivers--a conference that valued their contribution, provided them with excellent speakers including some from overseas, was held in an attractive venue, and provided good food and plenty of opportunities for networking. This conference, she imagined, would be part of a national caregivers' week.

Last month, Featherston's vision was fulfilled with a two-day national conference at Auckland's Alexandra Park and study days in Dunedin, Christchurch and Wellington. Guest speaker at all four gatherings was professor of gerontology nursing at the United Kingdom's (UK) University of Sheffield, Mike Nolan. Nolan was very impressed at the turnout from caregivers, particularly with the 460 at the Auckland conference. "I cannot imagine being able to get these sort of numbers at a similar conference in either the UK or the States," he said.

At all four events, Nolan delivered an address entitled "Caring, a natural or learnt art?" This was a vital question, he said, as never before in human history had so many people been able to live so long. As a result, the need for carers had never been greater. Figures common to all countries showed families gave 80 percent of the care older people received. Of the 20 percent of paid care, 80 percent was given by caregivers with only 20 percent by registered nurses. "The quality of life of many older people lies in your hands," he said.

Nolan questioned whether society really valued older people and their care. "Caring can be seen as a second-rate activity, with more value being placed on the techniques of modern medicine. But these techniques are all about curing diseases. When people age, their diseases frequently can't be cured and the art of caring becomes much more important."

Although most older people preferred to be cared for in their own homes, over 20 percent of people over 80 and 30 percent over 90 were in rest-homes. "Entry to a nursing home in the UK is almost seen as a failure, yet for some people living at home at the age of 90 isn't all that it's cracked up to be--it can be very lonely and isolating. Care homes have a valuable role to play and we must be careful we don't close off options for older people."

Much of Nolan and his associates' research over the last ten years has explored what makes for a meaningful life for older adults and their carers. They have discovered that ageing well is largely a subjective experience. They have also identified six senses needed to help people age well and to help their carers give good care. These are a sense of security, a sense of belonging, a sense of continuity, a sense of purpose, a sense of significance and a sense of achievement.

Nolan sees a close link between the way caregivers are treated and how old people are treated. He has observed different types of care home communities. The controlled community is a place where staff are very much in charge and there is a clear hierarchy, with old people at the bottom. The cosmetic community offers better facilities than many five-star hotels but the care is not all that good. "We want complete communities where everyone is equal and valued, and older people are at the centre. "Organisations with little hierarchy work best because everyone has a contribution to make. Caregivers need to know their care has made a difference. They also need affirmation and an occasional pat on the back and that costs nothing."

In an address in Auckland entitled "Essential care--the core of comfort at the end of life", Nolan suggested most care homes and care givers, including nurses, took a narrow view of care for people who were dying. Ensuring people bad a "good" death in care homes was a real challenge, he said. "A quarter of people over 65 die in care home environments in England and the numbers are increasing. Caregivers are the key group of staff responsible for the quality of these people's deaths."

The characteristics of a good death included knowing when death was coming and understanding what to expect; being able to retain some sense of control over what was happening; having control over pain relief and other symptoms; having choice over where death occurs; having access to spiritual or emotional support; having time to say goodbye; and being able to die at a time that did not prolong life pointlessly. Palliative care offered in many care homes was largely confined to terminal stages in a person's life. "We need radical improvement. In nine deaths out of ten, there is scope for a palliative approach, which means active care for those whose diseases cannot be cured.

"The basic minimum everyone needs is comfort and affection. But there are other spiritual and ethical dimensions that are often ignored and neglected. Many older people's desire to discuss end-of-life issues is ignored because of our reluctance to be more open about communicating about death."

A survey of 367 carers at the conference, conducted a few hours before Nolan gave his address, showed 82 percent allowed residents to talk openly about death, 73 percent were comfortable talking about death and spirituality, 67 percent felt families' grief was addressed, only 55 percent felt they had had enough training around this issue, 44 percent felt they knew residents' wishes about death and 57 percent felt there were enough staff to do the work. Twenty-seven percent thought staff numbers were insufficient. Most of these figures were considerably higher than studies conducted in the UK, Nolan said.

Other speakers at the Auckland conference included United States nurse practitioner Michal Boyd, who is presently lecturing at the Auckland University of Technology. She discussed ways of managing residents' challenging behaviour. Other sessions of particular interest to the caregivers was an address on pain in older adults, given by Auckland gerontology clinical nurse specialist Kathy Peri, and understanding the difference between dementia and delirium, delivered by Auckland University lecturer Katrina Lenzie Smith. Age Concern elder abuse co-ordinator, Chris Frew, discussed the incidence of elder abuse in aged-care facilities and NZNO professional nursing adviser Margaret Cain outlined a scope of practice for caregivers, advising them to do only those things they knew they could do and to ask for help whenever a client's condition changed. She described the ways in which caregivers can be investigated under the Code of Health and Disability Services Consumers' Rights. "Residents and patients complain about receiving insufficient or incorrect information, being treated rudely or insensitively, receiving incorrect diagnoses or treatment, and being subject to inappropriate conduct from those caring for them." Cain and other NZNO staff present encouraged caregivers to consider joining either NZNO or the Service and Food Workers' Union in order to receive protection and advice whenever they needed it.

Three members of the gerontology research team involved in researching the meaning of patient-centred care in the New Zealand context also gave a presentation. A report on the launch of the research's findings at Auckland's Manukau Institute of Technology the following day appears on p14.

Summing up the two-day conference, Featherston stressed the importance of teamwork. "We can't give good care on our own. We all have to work together, nurses, caregivers and all other members of the care team." In his concluding remarks, NZNO chief executive Geoff Annals said caregivers presented a challenge to nurses. "Nurses as a professional group find it hard to value the notion of 'caring' yet this is what our clients value. Nurses need to rediscover the essential nature of caring in order to put it back into our practice."

Speaking to Kai Tiaki Nursing New Zealand as the conference ended, Nolan said nurses needed to be wary about walling off knowledge and seeing it as their exclusive possession. "Nurses need to embrace the caregiver role and work with caregivers to create positive cultures of care. NZNO is to be congratulated for honouring the role of caregivers."