Atlantic Canadians have grown up with stories of navigating the seas. Navigation takes on new meaning to many who are moving into the realm of caregiving.

Family caregivers must chart their way through complex systems in order to determine what supports are available and how to access them. They need an advocate to be the navigator. As with navigation, family caregiving is not new to Atlantic Canadians; family ties have remained strong and resilient, surviving all sorts of challenges. What is new is the changing context in which family caregiving occurs. Caregivers, who are traditionally women, are caring over a longer period of time for family members who previously would have received the same type of care in an institution.

Atlantic Canadians are proud of their commitment to family and quality of life: pride and independence are their hallmarks. But how do they sustain this role in the face of new situations? What kind of help do they need to maintain their treasured independence? What services already exist to help family caregivers? How can the formal system, whose goal is to provide services to these families, respond in a truly helpful way?

A recent study conducted by the Nova Scotia Centre on Aging at Mount Saint Vincent University (Halifax, NS), funded by Health Canada's Population Health Fund, considered some of these issues. Researchers conducted a lengthy telephone survey of 155 respondents and facilitated eight focus groups in the four Atlantic provinces. Participants spanned the public, private and volunteer sectors. The common thread was that they provided some type of support to family caregivers, be it respite, emotional support, education, information, recognition or specialized assistance. The overwhelming message was that while there may be a "sea" of supports out there in the four provinces, there was a lot of "fog" when it came to actually knowing what the options were.

Moreover, families may be "fogged in" by such barriers to accessing service as their pride and independence, literacy issues, fears of disclosing financial information, electronic responses, or stringent eligibility criteria for services. Using the metaphor of a puzzle (rather than the sea), the researchers explored the many pieces and configurations of support services evident in the four provinces in hopes of linking them to complete the whole picture. The major missing pieces were navigation, communication and coordination. Respondents from all sectors, including family caregivers themselves, reported that finding out about the services presented a challenge: "People are passed around and around until they finally find someone who can help them ... need some kind of good system in place, one number to call, instead of being passed around." (Newfoundland respondent).

Family caregivers often don't have the time or energy to navigate the challenging waters themselves, particularly when they are in a crisis situation. What speaks to all service providers is the enormous frustration created because of the lack or inaccessibility of one place/person who can do the navigating. And if this advocate is available in some areas, that may not be so in others. Also, navigation is sometimes hindered by the reality that formal services are tied to the care receiver: few services are targeted directly to the caregiver's needs.

Contributing to the picture is the assortment and complexity of terminology used. Some of this can be attributed to the recent restructuring of health care systems in each of the four provinces.In nautical terminology, the wind has shifted. Even providers themselves struggle with knowing how to approach the unsettled seas. Who does what? And most importantly, how can the family caregiver receive services?

An unsettling finding was that even when options such as adult day programs, service directories or toll-free numbers were available, they were often not utilized to capacity. People may be unaware of day programs, lack knowledge of their value, be deterred by fees, lack transportation, or may find the times unsuitable. Service directories in each province proved to be a wealth of information - truly useful navigational charts - however, because they were commonly linked with a specific condition, they often were unknown to those with other challenges. Moreover, people didn't think of calling toll-free numbers for caregiving support information although the organizations may have an emotional and information support mandate: "The help-line is for crisis, but people don' think of it." (Prince Edward Island participant).

Surely, these findings beg the question - are existing supports meeting the needs of caregivers as defined by them? Where to go? The Victorian order of Nurses of Canada (VON) provide a model for the navigation role: they have an established history of home nursing and family support. They have the trust of the community. They have the ability to forge the necessary linkages between providers and caregivers and among sectors. And they have responded to changing needs. However, even in three of the four provinces where they operate branches, their level of service varied among regions and they, too, like all providers, were hindered by limited resources.

Many other providers do a very good job of navigation for their clients: for example, the provincial home care programs. But in each province, it was clear that they serve only a portion of families who could benefit from support. Who is steering the ship? There may be many captains, and that can be a strength because it allows for a diverse range of services. But it can also result in getting lost at sea.

Service providers need to forge stronger linkages among sectors and increase their own awareness so that they can improve service to caregivers. The key seems to be the targeting of information to a range of professionals and other service providers as well as family members: "If you are providing service, you need to make yourself known to those who know the family situation - clergy, doctors, home care workers, care coordinators .." (Nova Scotia).

The truth is that many families may not seek information about services until they actually need them and then the need is immediate. In terms of the sea, faulty navigation can result in shipwrecks; in terms of caregiving, it can result in caregiver exhaustion and breakdown, creating further stress in a system already struggling to meet needs. END Marlene MacLellan is Coordinator of the Nova Scotia Centre on Aging, Mount Saint Vincent University. Ethel Langille is Project Coordinator and Anne Berrigan is Project Assistant. All three are authors of the report Both Puzzle and Paradox: Support for Informal Caregivers in Atlantic Canada, available from the Nova Scotia Centre on Aging, Mount Saint Vincent University, Halifax, NS B3M 2J6.