Safety at home: learning from those with dementia and their caregivers

Most hospital patients eagerly anticipate being discharged and sent home. While patients with dementia are no different in that regard, their homecoming can often include significant safety risks - falls, injuries, fires, poisoning and wanderings to name a few.

That's why health professionals often recommend modifications or assistance at home. But here is the issue: in-hospital assessments happen outside the patient's comfort zone. That means results may not accurately reflect real risks. People with dementia may know how to safely use their own stove, but not the one in the hospital, leading health care professionals to over-estimate the dangers waiting for patients after their release.

Even in-home assessments can go awry: newly-released patients can behave differently knowing they are being evaluated. In addition, their abilities may change depending on the time of day the evaluation takes place. The way they act before they take their medications, or late at night, often doesn't reflect their normal behaviour. Their abilities can also change as the disease progresses, making initial assessments out of date.

VeroniqueProvencherUniversité de Sherbrooke health researcher Véronique Provencher aims to get to the bottom of this. She's just launched a study designed to shed light on the best way to meet the needs of those with dementia once they are released from hospital.

In her case, the research has special significance. "My motivation is my grandmother, who wanted just one thing: to live in her own house, despite the risks, and despite the fact we felt she needed help," says Provencher.

Her research, funded by Fasken Martineau, will provide insights based on 12 case studies. In each case, she will interview a patient with early Alzheimer's, their main caregiver, one of the occupational therapists who assessed the patient at the hospital, and one of the occupational therapists who assessed them at home.

Part of what makes this study valuable is that it will incorporate the views of those with dementia and their caregivers. Provencher will interview them before release, after six weeks, and again at the three and six month marks.

"The family and patient are usually involved with risk assessments, at least to a certain extent," says Provencher. "However, whether those risks and the support recommended to mitigate those risks at home are acceptable to the patient and their family is not always recognized in the final recommendations."

All four people involved in each case study will be asked to provide in-depth answers to a series of questions. Those include questions asking for specific examples of risk, whether they perceive those risks as acceptable or not, and what type of support they think would help to mitigate those risks.

Provencher expects to have results by the end of 2017 and will share her findings through conferences to health care professionals as well as to patients and their families.

"My hope is that this knowledge will help to provide more appropriate care and services to meet patients' and their carers’ needs, which will help optimize safety and home support," she says.

Do you want better care for people with dementia and to help find a cure? The Alzheimer Society Research Program seeks to fund the most promising research. Whatever you donate today will help us reach our goal faster.

Last Updated: 11/08/2017