Behavioural Symptoms of Dementia

Care for Patients in Hospitals and Residents in Long-Term Care Homes

Click below to see a list of brief quality statements and scroll down for more information.

Quality Statements in Brief

Quality standards are sets of concise statements designed to help health care professionals easily and quickly know what care to provide, based on the best evidence.

See below for the quality statements and click for more detail.

Quality Statement 1: Comprehensive Assessment
People living with dementia and symptoms of agitation or aggression receive a comprehensive interprofessional assessment when symptoms are first identified and after each transition in care.

Quality Statement 2: Individualized Care Plan
People living with dementia and symptoms of agitation or aggression have an individualized care plan that is developed, implemented, and reviewed on a regular basis with caregivers and agreed upon by substitute decision-makers. Ongoing review and update of care plans includes documentation of behavioural symptoms and the person’s responses to interventions.

Quality Statement 3: Individualized Nonpharmacological Interventions
People living with dementia and symptoms of agitation or aggression receive nonpharmacological interventions that are tailored to their specific needs, symptoms, and preferences, as specified in their individualized care plan.

Quality Statement 4: Indications for Psychotropic Medications
People living with dementia are prescribed psychotropic medications to help reduce agitation or aggression only when they pose a risk of harm to themselves or others or are in severe distress.

Quality Statement 5: Titrating and Monitoring Psychotropic Medications
People living with dementia who are prescribed psychotropic medications to help reduce agitation or aggression are started on low dosages, with the dosage increased gradually to reach the minimum effective dosage for each patient, within an appropriate range. Target symptoms for the use of the psychotropic medication are monitored and documented.

Quality Statement 6: Switching Psychotropic Medications
People living with dementia who are prescribed psychotropic medications to help reduce agitation or aggression have their medication discontinued and an alternative psychotropic medication prescribed if symptoms do not improve after a maximum of 8 weeks. Ineffective medications are discontinued to avoid polypharmacy. The reasons for the changes in medication and the consideration of alternative psychotropic medications are documented.

Quality Statement 7: Medication Review for Dosage Reduction or Discontinuation
People living with dementia who are prescribed psychotropic medications to help reduce agitation or aggression receive a documented medication review on a regular basis to consider reducing the dosage or discontinuing the medication.

Quality Statement 8: Mechanical Restraint
People living with dementia are not mechanically restrained to manage agitation or aggression.

Quality Statement 9: Informed Consent
People living with dementia and symptoms of agitation or aggression are advised of the risks and benefits of treatment options, and informed consent is obtained and documented before treatment is initiated. If a person with dementia is incapable of consenting to the proposed treatment, informed consent is obtained from their substitute decision-maker.

Quality Statement 10: Specialized Interprofessional Care Team
People living with dementia and symptoms of agitation or aggression have access to services from an interprofessional team that provides specialized care for the behavioural and psychological symptoms of dementia.

Quality Statement 11: Provider Training and Education
People living with dementia and symptoms of agitation or aggression receive care from providers with training and education in the assessment and management of dementia and its behavioural symptoms.

Quality Statement 12: Caregiver Training and Education
Caregivers of people living with dementia and symptoms of agitation or aggression have access to comprehensive training and education on dementia and its associated behavioural symptoms. This training and education includes management strategies that are consistent with people’s care plans.

Quality Statement 13: Appropriate Care Environment
People living with dementia and symptoms of agitation or aggression whose behavioural symptoms have been successfully treated are transitioned to an appropriate care environment as soon as possible.

Quality Statement 14: Transitions in Care
People living with dementia and symptoms of agitation or aggression who transition between settings have a team or provider who is accountable for coordination and communication. This team or provider ensures the transmission of complete and accurate information to the family, caregivers, and receiving providers prior to the transition.

Resources Quality Statements Advisory Committee About

Summary

This quality standard addresses care for people living with dementia and the specific behaviours of agitation and aggression. The quality standard focuses on care for people who are in an emergency department, admitted to a hospital, or in a long-term care home. It also provides guidance on the care given when a person is transitioned between these settings—for example, when someone is discharged from a hospital to a long-term care home.

Scope of This Quality Standard

This quality standard focuses on care for people living with dementia and the specific behaviours of agitation or aggression who are in an emergency department, admitted to a hospital, or in a long-term care home. It also provides guidance on the care given when a person is transitioned between these settings; for example, when someone is discharged from a hospital to a long-term care home.

Why This Quality Standard Is Needed

Dementia is a chronic and progressive decline in cognitive ability that interferes with daily functioning. It can be caused by disease or injury. Dementia affects about 15% of Canadians aged 65 and older. In 2011, about 750,000 Canadians were living with dementia; an expected 1.4 million Canadians will be living with dementia by 2031.

Signs and symptoms of altered perception, thought, mood, or behaviour may occur in people living with dementia; these are known collectively as the behavioural and psychological symptoms of dementia. Among these symptoms, agitation and aggression are two of the most common, with complex causes that can be biological, social, or psychological. It has been estimated that 80% of people living with dementia who are living in long-term care homes display symptoms of aggression at some stage of their dementia. Both nonpharmacological interventions and pharmacological interventions can be used to manage agitation or aggression in dementia.

Agitation and aggression in dementia pose care and safety issues for people living with dementia and for those who care for them. Unlike the cognitive and functional deficits of dementia that decline over time, the episodic nature of agitation and aggression contributes to the complexity of their prevention and management. These symptoms are a major cause of hospitalizations and transfers to long-term care homes. Furthermore, they can cause compassion fatigue in families and caregivers of people living with dementia, and are challenging for health professionals.

There are important gaps in the quality of care received by people living with dementia in Ontario. For example, the proportion of long-term care home residents prescribed antipsychotic medication varies widely between homes. There is also variation between homes in the use of physical restraints.¹⁰ With the incidence and prevalence of dementia growing with Ontario’s aging population, there is a need for a provincial quality standard focusing on the care of people living with dementia and symptoms of agitation or aggression.

Based on evidence and expert consensus, this quality standard addresses key areas identified as having significant potential for quality improvement in the care of people living with dementia and symptoms of agitation or aggression in Ontario. The 14 quality statements that make up this standard each provide guidance on high-quality care, with accompanying indicators to help health care providers and organizations measure their quality of care. Each statement also includes details on how its successful delivery impacts people living with dementia, their caregivers, health care professionals, and health care services at large.

Principles Underpinning This Quality Standard

This quality standard is underpinned by the principle that people living with dementia have the right to receive services that are respectful of their rights and dignity and that promote self-determination.

People living with dementia and symptoms of agitation or aggression are provided service that is respectful of their gender, sexual orientation, socioeconomic status, housing, age, background (including self-identified cultural, ethnic, and religious backgrounds), and disability.

How Success Can Be Measured

Early in the development of each quality standard, a small number of health outcomes are chosen as the most important measures of success of the entire standard. The outcomes are mapped to indicators that reflect the goals of the standard. These outcomes and the associated indicators guide the development of the quality standard so that every statement within the standard aids in achieving the chosen outcomes. Each statement is accompanied by process, structure, and/or outcome indicators that measure the successful implementation of the statement.

The following set of outcome indicators has been selected to measure the impact of this quality standard as a whole:

Percentage of people living with dementia and symptoms of agitation or aggression who experience fewer or less frequent behavioural symptoms
Percentage of people living with dementia and symptoms of agitation or aggression who are admitted to mental health beds in hospital under the Mental Health Act (Form 1)
Percentage of long-term care home placement applications that are rejected by a long-term care home owing to an inability to meet client care needs
Percentage of people living with dementia and symptoms of agitation or aggression who are readmitted within 30 days of hospital discharge
Rate of emergency room use by people living with dementia and symptoms of agitation or aggression, per 1,000 population
Number of incidents in hospitals and long-term care homes related to symptoms of aggression in dementia: patient-on-patient or patient-on-staff incidents

What Is the Case for Change?

According to a report published by the Alzheimer Society of Ontario in 2012, about one in ten Ontarians 65 and older were living with dementia. This figure represents an increment of 16% over the last four years. The same report estimated that by 2020, approximately 250,000 seniors in Ontario will be living with the disease⁵.

Data suggests that there are significant gaps in the quality of care received by people living with dementia in Ontario. For example, only 12.4% of long-term care home residents experienced improved behavioral symptoms and this proportion has not improved in the last four years⁶. Data also shows that in Ontario, the percentage of long-term care home residents without psychosis using antipsychotic medications shows a significant variation (Figure 1).

Figure 1

To learn more about why this standard is needed, please review the Information and Data Brief for this standard.

⁵Dementia Evidence Brief (page 4). Available here.

⁶Quality Standards - Behavioural Symptoms of Dementia Care in Hospitals and Long-Term Care Homes - Data source: Continuing Care Reporting System: provided by the Canadian Institute for Health Information. Risk Adjusted.

What Does It Mean for Patients and Caregivers?

"People just don’t realize that dealing with a patient with dementia is a magnitude greater than dealing with other patients, because in addition to everything else you are dealing with, you have irrational behavioral issues. It was a long and lonely job to take care of my wife at home…it was 8 and half years until she passed. It was hard to get her into long-term care homes for respite because she had behavioral issues, and there is no standard out there. They didn’t know how to deal with her. The hardest thing for someone who jumps into the job of caregiver is to navigate the fragmented healthcare system. There is no manual, no training. I was on the panel (joined the Committee) to create some kind of foundation to improve care for dementia patients and their family caregivers, to change usual practices which seem less than adequate at present, especially in hospitals and long-term care facilities. And maybe also with these standards for quality care, we are able to help people to understand the struggles caregivers are going through, and be more compassionate and knowledgeable. Because if we don’t look after the caregivers who is going to look after the patient?"

- Ken Wong, expert panel member

What Does It Mean for Providers?

"Implementing the behavioural symptoms of dementia quality standard represents an opportunity to advance quality in a way that we have never had before and that no other province in Canada has had. Implementing the quality standards will represent a paradigm change. The biggest change relies on replacing non-evidence based interventions with evidence based interventions. With a spirit of innovation and a willingness to engage in partnerships, and at times a little more or less runway, this is absolutely doable. [This paradigm shift] is going to provide better service user experience, a different lens that is more aligned with recovery and better clinical outcomes for the patient. I hope organizations are going to embrace the opportunity to reduce the gap between the emergence of evidence and the delivery of best practices to their patients. And if patients and family members have these statements in front of them they will be more informed about the best evidence-based treatments, they will request and ask the right questions to make sure they get the best evidence based treatments."

- Dr. Phil Klassen, expert panel member

Timeline for This Quality Standard

This quality standard was completed in October 2016.

Updated: February 2017

For more information, contact QualityStandards@HQOntario.ca.

Evidence to Improve Care