Working and caring – how do working carers cope and what would help them?

In a study of employees who provide informal care for older people[1], we found there are a variety of ways in which working carers were responding to their situation. Some were just waiting for the next crisis; some were making deliberate plans and some responding to gradual change. Others were discussing the future with the older people they were caring for and within their family circles. We often heard about reluctance on the part of the older people to express their wishes clearly and to make well-informed choices. There can be differences of opinion within families about whether admission to residential care is the best option and for whom. Several people accepted their parent’s clearly expressed wish to be supported in their own home, even when this raised the level of care needed from family.

Some of the working carers had changed their working hours to accommodate eldercare responsibilities. Part time work improves flexibility to handle work and care with less strain.

I don’t work on Mondays, so I have time to catch up hours in arrears. It is great having a ‘day up my sleeve’ so that I can go and visit.

Several had negotiated or were considering alternative living arrangements for the older people. Sometimes this meant bringing the care recipients closer to the carers.

Four years ago Ingrid’s parents shifted from a small village back into the city, where they lived in their early married life, and bought the house next door to Ingrid. They pooled family resources to do this, because they saw it as a logical way for her to combine full-time work with looking out for them.

Access to information and service coordination
A very strong theme in the group discussions was access to relevant and accurate information on eldercare services and how to manage work and care. The carers called for a consolidated source of information, and discussed whether this should be web-based or telephone-based. Some health professionals were described as “not forthcoming” and this adds to stress on carers. A GP can be either a weak or a strong link in creating and managing a supportive environment for dependent elderly people.

Not having time to access information is an issue for me. It would be useful if the GP/hospital had an information pack for carers on where we can get assistance and information on what is available, so we don’t have to go hunting for this information. I can’t sit on the phone for hours tracking down services. Life is harder than it needs to be simply because I don’t know what’s available and how to access that help.

Making relevant and accurate information widely available would also help to improve understanding of the growing need for eldercare and the situation of working carers. The study indicated the need for improved understanding among work colleagues, supervisors and managers, in the general community and among older people themselves.

There is a clear need for service coordination, and for open dialogue about what family carers can and cannot be expected to offer. Even within the same city, people found a lack of consistency and uniformity in the information from different parts of the health system.

Some families need help in working through older people’s denial or reluctance to deal with physical or mental deterioration and their apprehension about receiving help from outside the family. Bringing in independent advice, in a sensitive way, from health and community service providers would be very helpful in family discussions, where the dynamics between siblings, between parents and adult children, and between marital partners can be difficult.

Exploring workplace arrangements for working carers
It is important that leave provisions to accommodate eldercare are made explicit and are extended equitably to all workers in an organisation. In New Zealand, the Employment Relations (Flexible Working Arrangements) Amendment Act 2007 came into force in July 2008. This allows employees responsible for the care of any person the right to request flexible working arrangements. It is, however, at the employer’s discretion whether such applications are approved. Formal options for working carers have been adopted in other countries. These include arrangements such as “annual hours of work” packages, “care giving sabbaticals” or employer/worker shared support for day care and information services. The discussion groups strongly endorsed support groups for working carers. Some participants found the focus groups we conducted were very helpful, even if that was not their primary intention.

The costs of care
The working carers in our research did not often mention the financial costs of care, but these could be significant in workforces with a higher percentage of lower paid employees. Most of the cost of services will fall upon the older people themselves, but survey participants give examples where family resources had been pooled to develop shared housing options; some families had to meet the cost of renovations to fulfil an older person’s needs and travel costs could be substantial.

There were other, less tangible, costs. These included the cost of holidays not taken, time not available for personal relaxation or for spending with friends and younger family members, personal health costs and loss of goodwill in family relations. This is reflected in the correlation we found between the highest levels of care and the most negative feelings.

Providing care to older people while still engaged in the paid workforce can be a complex balancing act. While at any one time maybe only one in ten employees (from our best estimate) is a working carer of older people, over a working lifetime a much higher percentage will experience this dual role. Recognition in the workplace that they are not alone in their situation, and that there is some prospect of effective support from the community, is an important part of building public understanding of ageing in New Zealand today.

---

[1] Judith Davey and Sally Keeling (2004) Combining work and Eldercare: a study of employees in two City Councils who provide informal care for older people. Funded through the Department of Labour’s “Future of Work” Fund. In the study 85% of the carers were aged 40 plus and the average age of the care recipients was 81.