This indicator describes the percentage of long-stay home care patients whose primary informal caregiver is unable to continue in caring activities and/or expresses feelings of distress, anger or depression in patients who had at least one unpaid caregiver. A lower percentage is better.

Public reporting

Patient-centred

Outcome

The results are derived from RAI-HC assessment information in the HCRS database. Therefore, the results are representative of long-stay home care patients receiving publicly funded home care (i.e., home care patients who require care for more than 60 days represent approximately half of publicly funded home care patients. The remaining population are short-stay home care patients who require short-term care while they recover from injury or surgery.) Distress, anger, or depression and ability to continue providing care are subjective measures. Results may underestimate true rates of distress if some informal caregivers do not want to admit that they feel burdened by having to care for a friend or family member or if they do not exhibit obvious signs of distress. Similarly, cultural differences exist that can affect one’s perception of distress caused by caring for a friend or family member since it is simply accepted as something that should be done, regardless of the stress it may cause. Data are not risk adjusted for factors associated with rates of distress, such as cognitive impairment in the patient, hours of informal care provided by the caregiver, or hours of formal care provided to the patient. Includes patients of varying levels of complexity, including palliative patients.

This indicator was jointly developed by interRAI and the Canadian Institute for Health Information (CIHI). The caregiver may live with the patient or the caregiver may visit the patient regularly or respond to needs that the patient has. A home care patient may have more than one person providing unpaid support. The primary informal caregiver is the person who is most helpful to the patient and the person who the patient can rely most upon. The questions in the RAI-HC asking about the caregiver status are meant to assess the reserve of the informal caregiver support system. The questions are posed to the home care patient and informal caregiver separately. The current situation and the projected future needs are both considered. G2a. A caregiver is unable to continue in caring activities The caregiver, client, or assessor believes that a caregiver(s) is not able to continue in caring activities. This can be for any reason, for example: lack of desire to continue, geographically inaccessible, other competing requirements (child care, work requirements), and personal health issues. G2c. Primary caregiver expresses feelings of distress Primary caregiver expresses, by any means, that he/she is distressed, angry, depressed, or in conflict because of caring for the client.

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