Families Provide Dementia Care — Why Must They Also Be The Air Traffic Controllers Of The System?

Saskia Sivananthan, Affiliate Professor, Department of Family Medicine, McGill University; Alexandra Whate, Research associate, University of Waterloo, and Larry Chambers, Director, Research and Scholarship, Niagara Regional Campus, Michael G. DeGroote School of Medicine, McMaster University

Canada’s dementia strategies emphasize helping people live well at home for as long as possible. But for many people living with dementia, remaining at home relies almost entirely on the unpaid labor, financial sacrifices and persistence of family caregivers.

As health service researchers, we have spent decades studying systems of care for people living with dementia. Let’s look at the case of Margaret and Lisa, a fictional mother and daughter whose stories are based on the evidence we heard as we gathered material for our most recent study.

There was no single moment when Lisa took over as primary caregiver for Margaret during her mother’s dementia journey. Instead, it happened one difficult decision at a time. Lisa spent hours searching for answers: What support would help her mum remain safely at home? How did home care operate, and who paid for it? What treatment options are out there? Would a GPS tracker provide reassurance or feel intrusive? And who could help them prepare for what lay ahead?

As Margaret’s dementia progressed, Lisa made increasing personal and financial sacrifices to keep her mother safe and supported at home. She reduced her hours at work, took unpaid leave and devoted countless hours to coordinating appointments, services and care across multiple providers.

By the time Margaret entered long-term care, both mother and daughter were exhausted. The family felt she entered long-term care too soon, but the decision was driven less by Margaret’s preferences than by the realities of a system struggling to provide adequate care at home.

In short, Lisa became the air traffic controller for her mother’s care, directing doctors, hospitals, home-care providers and community services while also trying to be her daughter. Families expect to help, but they should not be expected to coordinate the entire health- and social-care systems for the person they care for.

Why care co-ordination matters

Dementia is a complex journey that unfolds over several years and differently for each person and care partner.

Unlike a stroke or heart attack, which has a clearly defined medical event, the dementia pathway is highly variable and unfolds over time. It is often a series of transitional events marked more by functional (as well as cognitive and behavioral) changes. These could include needing additional support at home, help with transportation, respite for a caregiver, changes to medication or eventually a move to long-term care.

Families are often left to recognize that something has changed, figure out what support is needed and contact multiple parts of the system themselves. This complexity is what makes care co-ordination so critical and so difficult to define.

At its core, care coordination means organizing care across multiple providers and services so that people receive the right support, at the right time, without duplication or gaps.

For a family, care co-ordination means:

• One consistent point of contact

• A shared care plan

• Communication between providers

• Proactive help navigating services as needs change

• Connections across health care, home care, housing and community services

While many good programs already exist, they are often delivered in isolation, with limited coordination across services and the health system. This leaves families to manage the ongoing task of connecting care and supports as needs evolve over time.

Measuring what makes care coordinated

The Canadian government has funded at least 86 dementia projects through its National Dementia Strategy, offering education, awareness and community resources. But a collection of good programs is not the same as a coordinated, person-centered system of care across the dementia journey.

Information helps families navigate the system; co-ordination helps the system respond. In our recent study, we developed a practical way to measure the degree to which dementia programs include elements of co-ordination.

The Care Coordination Assessment Matrix identifies the core features of coordinated dementia care. To test whether the matrix worked, we applied it to two very different groups of dementia programs.

Eleven federally funded initiatives that focused mainly on education and information scored an average of 36 per cent. Four provincially funded programs that were explicitly designed to co-ordinate care scored 81 per cent, reflecting their stronger emphasis on navigation, multidisciplinary teams, provider connections and ongoing follow-up.

This matters because what gets measured, gets funded. Policymakers and funders now have a practical way to assess dementia-care co-ordination.

Designing a system that works together

Air travel does not happen safely because every passenger has someone helping them design their own flight path. It functions because the system itself is coordinated by air traffic controllers: everyone has clear roles, shares the same up-to-date information and follows a coordinated plan from takeoff to landing.

Canada’s dementia-care system is currently like an airport without an air traffic controller. Skilled health-care professionals are doing important work, and services do exist across health, social care and community organizations. But without clear responsibility and structures for coordinating care across the system, each provider sees only part of the journey while families are left to connect the pieces.

In air travel, no one would expect passengers or pilots to co-ordinate aircraft movements themselves. Yet in dementia care, we routinely expect family caregivers to perform the equivalent role.

Governments should invest in the infrastructure required for coordinated care just as they have for other major conditions, establish clear accountability for co-ordination across organizations and sectors, and monitor whether people are actually experiencing timely, connected care.

A system is not coordinated because it has many programs. It is coordinated when those programs work together so that people experience a seamless journey through care.

This article is republished from The Conversation under a Creative Commons license. Read the original article.

(TheConversation/APC)