Caregivers commonly go through several transitions as the care recipient declines. There is no one “model” for how to best respond to transitions; caregivers may experience many challenging emotions, others very few. Some caregivers may find earlier transitions more challenging; others may find transitions later in the disease process more difficult to handle. There are four common transitions that many caregivers must face. The first transition occurs when the caregiver begins helping with instrumental activities of daily living (e.g. cooking, cleaning, and money management). The second transition occurs when the caregiver begins helping with activities of daily living (e.g. bathing, dressing, eating, going to the bathroom). The third transition occurs when the caregivers transfers the care recipient to hospital or long-term care. The fourth transition occurs when the care recipient dies. Transitions are difficult for caregivers in many ways, including role changes for both caregiver and care recipient, anticipatory grief, physical and emotional exhaustion, and negative emotions associated with caregiving.
“Service providers don’t know that dementia is terrifying not only for the one who has it, but also for the one who is providing care. Because you’re losing the person, you don’t know how they’re going to be day-to-day”. (Caregiver)
“We need to find a way to make end-of-life care conversations empowering – so that the conversations are to help people make decisions for themselves instead of the system making them for you, or winding up in acute care with suffering and no hope”. (Policy analyst)
“It’s hard for caregivers to talk to the people they are caring for at times because those people are scared about the changes, and don’t want to find out or know – so refuse help that in turn would decrease caregiver burden”. (Service provider)
The ability to have even brief informative and compassionate conversations with caregivers about “what to expect” during transitions in the illness trajectory can significantly reduce caregiver distress. However, conversations with caregivers about transitions can be a daunting task. Adding to the above factors, transition conversations with caregivers can be made more difficult by:
- Caregiver concerns that the care recipient will be “taken away”
- Not wanting to hear “bad news”
- Care recipients refusing to accept they can no longer be cared for at home, making it difficult to plan for the future
- Service providers expert knowledge about care recipients’ decline (particularly in dementia) may be questioned by caregivers because they are afraid or do not see the decline.
- Caregivers not wanting to “frighten” care recipients with these conversations.
- Care receivers may not want formal care (due to privacy, fear, abusive relationship, etc.) and expect caregiver to provide all care.
- Tensions between what caregiver wants and what care recipient wants, causing division for the service provider.
- Focus on the care recipient rather than the caregiver masks that they also experience transitions requiring support and resources
Taken together, these barriers to discussions with caregivers about transitions lead to a “culture of crisis”, where caregivers often only access services once a situation has become unmanageable. For caregivers, the lack of family support in conjunction with physical and psychological exhaustion facilitates crisis situations. Our care system also reproduces a culture of crisis through for caregivers by privileging acute care interventions over prevention. Crises also arise from lack of resources, caregivers not knowing what questions to ask, and/or not knowing what services are available. One way that service providers can alleviate this crisis culture is to engage in challenging conversations on these difficult topics.
Examples of Difficult Conversations:
- Changes in IADL (Independent Activities of Daily Living)
- Change in physical care needed for recipient
- Cognitive changes in care recipient
- Hospital discharge
- Respite and self-care for caregivers
- Transition to long-term care
- End-of-life care
- Family dynamics
- Elder abuse/caregiver abuse
- Difficult emotions including stress, anger, grief, and resentment.