Dementia

Care for People Living in the Community

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 and Diagnosis
People suspected to have mild cognitive impairment or dementia receive a comprehensive assessment when signs are first identified. If diagnosed with either condition, they are then reassessed on a regular basis or when there is a significant change in their condition.

Quality Statement 2: Interprofessional Care Team
People living with dementia have access to community-based dementia care from an interprofessional team with expertise in dementia care, of which the person living with dementia and their caregivers are integral team members.

Quality Statement 3: Individualized Care Plan
People living with dementia have an individualized care plan that guides their care. The plan identifies their individual needs, those of their caregivers, and goals of care. The plan is reviewed and updated on a regular basis, including documentation of changing needs and goals and the person’s response to interventions.

Quality Statement 4: Named Point of Contact
People living with dementia and their caregivers have one or more named providers on the interprofessional care team who serve as a point of contact to facilitate care coordination and transitions across settings.

Quality Statement 5: Education and Training for People Living With Dementia and Their Caregivers
People living with dementia and their caregivers have access to education and training on dementia and available support services.

Quality Statement 6: Education and Training for Health Care Providers
Health care providers delivering care and services to people living with dementia receive education and training in dementia care.

Quality Statement 7: Access to Support Services
People living with dementia and their caregivers have access to support services that are individualized and meet their ongoing goals and needs.

Quality Statement 8: Caregiver Assessment and Support
Caregivers of people living with dementia are assessed on an ongoing basis and offered supports to address their individual needs.

Quality Statement 9: Safe Living Environment
People living with dementia have access to a safe living environment that meets their specific needs, including design modifications and a range of housing options.

Quality Statement 10: Access to Primary Care
People living with mild cognitive impairment or dementia have regular visits with a primary care physician or nurse practitioner who provides effective primary care that meets both their general health care needs and their specific needs related to cognitive impairment or dementia.

Resources Quality Statements Advisory Committee About

Summary

This quality standard addresses care for people living with dementia in the community, including the assessment of people suspected to have dementia or mild cognitive impairment. The quality standard focuses on primary care, specialist care, hospital outpatient services, home care, and community support services. It also provides guidance on support for caregivers of people living with dementia.

For a quality standard that addresses 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, refer to Health Quality Ontario’s quality standard Behavioural Symptoms of Dementia: Care for Patients in Hospitals and Residents in Long-Term Care Homes.

For a quality standard that addresses palliative care, refer to Health Quality Ontario’s quality standard Palliative Care: Care for Adults with a Progressive, Life-Limiting Illness.

Scope of This Quality Standard

This quality standard addresses care for community-dwelling people living with dementia, including the assessment of people suspected to have dementia or mild cognitive impairment. The quality standard focuses on primary care, specialist care, hospital outpatient services, home care, and community support services. It also provides guidance on support for caregivers of people living with dementia.

This quality standard does not apply to care provided in an emergency department or hospital in-patient setting or to people living in long-term care homes. Nor does it address specific aspects of palliative care for people living with dementia.

For a quality standard that addresses palliative care, refer to Health Quality Ontario’s quality standard Palliative Care: Care for Adults with a Progressive, Life-Limiting Illness.

Terminology Used in This Quality Standard

In this quality standard, the term “caregiver” refers to an unpaid person who provides care and support, such as a family member, friend, or anyone identified by the person living with dementia.

In choosing this term, the lived experience advisors on our Quality Standard Advisory Committee also considered a number of other terms currently being used to describe this role locally, provincially, and internationally. These included “care partner,” “informal caregiver,” “family caregiver,” “carer,” and “primary caregiver.”

We acknowledge that not everyone in this role may identify as a “caregiver.” In addition, their role may change over time, especially as the person’s dementia progresses and they require more assistance. Our choice to use “caregiver” does not diminish or negate terms that an individual may prefer.

In this quality standard, “substitute decision-maker” refers to a person who makes care and treatment decisions on another person’s behalf if or when that person becomes mentally incapable of making a decision for themselves. The substitute decision-maker should be involved in ongoing discussions with the person about their goals of care, wishes, values, and beliefs so that the substitute decision-maker is empowered to participate in the health care consent process, if required. The substitute decision-maker makes decisions based on their understanding of the person’s wishes, or, if these are unknown or not applicable, makes choices that are consistent with the person’s known values and beliefs and in their best interests.

The Ontario Health Care Consent Act outlines a hierarchical list of people who would automatically be considered a substitute decision-maker when a person is incapable of making decisions about their own care.If a person is not satisfied with their automatic substitute decision-maker, they can formally appoint someone else to be their substitute decision-maker using a “Power of Attorney for Personal Care.” A “Power of Attorney for Personal Care” is a legal document in which one person gives another person the authority to make personal care decisions on their behalf if they become incapable.

Under Ontario’s Health Care Consent Act, a person is capable with respect to a health care decision if they have the ability to understand the information that is needed to make a decision and have the ability to appreciate the consequences of the decision or lack of decision. Capacity is issue- or task-specific. A person’s specific capacity to understand information and appreciate the decisions that must be made should be respected so that their mental capacity for a specific health care decision is recognized. A person may be capable with respect to making some health care decisions, but incapable with respect to others. If a person is incapable with respect to making a health care decision, the substitute decision-maker can give or refuse consent on the person’s behalf.

In this quality standard, the term “health care professional” refers to regulated professionals, such as nurses, nurse practitioners, pharmacists, physicians, physiotherapists, psychologists, occupational therapists, social workers, and speech-language pathologists. We use the term “provider” when we are also including people in unregulated professions, such as administrative staff, behavioural support workers, personal support workers, recreational staff, and spiritual care staff.

This quality standard includes statements that refer specifically to people living with dementia and people living with mild cognitive impairment:

Dementia is defined as a chronic and progressive decline in cognitive ability that interferes with daily functioning. Signs and symptoms of dementia include changes to memory, reasoning and judgment, language and communication abilities, mood and behaviour, problem-solving ability, and orientation. These may affect a person’s ability to work, live independently, and manage relationships.

Mild cognitive impairment is defined as a decline in memory, judgement, thinking, or language that is greater than the cognitive changes associated with aging and that does not interfere notably with activities of daily living. While mild cognitive impairment is not a diagnosis of dementia, people with this condition are at greater risk of developing dementia.

Of note, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) uses the term mild neurocognitive disorder and major neurocognitive disorder, and together these terms include both mild cognitive impairment and dementia.

Why This Quality Standard Is Needed

In 2015, about 175,000 people in Ontario were estimated to be living with dementia. Dementia affects about 15% of Canadians aged 65 and older. Age is the primary risk factor for dementia: the risk doubles every 5 years after age 65. Notwithstanding this increased risk in older people, dementia also affects younger people: nearly 7% of people diagnosed with dementia in Ontario are younger than age 66.

People living with dementia want to live well and independently and to participate in care decisions with their health care professionals and community service providers for as long as possible. However, the stigma associated with dementia often shifts the focus of others to the ways dementia impairs a person’s ability to do things, rather than the individual’s strengths and ability to participate in and enjoy activities and interactions. This stigma can also cause people to delay acknowledging symptoms and seeking help.

Recognizing and supporting people throughout the stages of dementia is important. This includes:

Being proactive in engaging people in decisions about their care and activities of interest
Offering care and services that meet individuals’ needs and preferences
Providing opportunities for people to participate in their communities and influence the design, planning, evaluation, and delivery of services

The debilitating effects of dementia have substantial personal and economic impacts on people living with dementia and their caregivers and families, as well as a considerable economic impact on the Canadian health care system and society more broadly. In Canada in 2008, the total annual economic burden of dementia, including direct costs, indirect costs, and caregiver opportunity costs, was estimated to be $14.9 billion.

As Canada’s population ages, the number of people living with dementia increases and so too grows the demand for dementia-related health care and community support services. In 2008, about 55% of Canadians with dementia (aged 65 and older) lived in their own homes; it is estimated this will increase to 62% by 2038. People living with dementia can live independently for some time; but as their condition progresses, they require increasing levels of support to help them remain in their homes and local communities for as long as possible.

Being a caregiver for a person living with dementia can be a rewarding experience. However, the role can also be physically, emotionally, and financially demanding and is associated with high levels of stress, strain, and social isolation. In comparison with caregivers of people without dementia, caregivers of people living with dementia provide 75% more care and experience about 20% higher stress levels. These caregiving demands tend to increase as the dementia progresses. If families and caregivers are to continue to provide the majority of care to this growing population, training and tailored supports are needed to assist them.

There are important gaps in the quality of care received by community-dwelling people living with dementia and their caregivers in Ontario. Across the province, nearly half of people living with dementia receiving long-stay home care had caregivers who were distressed. More than 60% of people exhibiting behavioural symptoms of dementia had caregivers who felt distressed. Data also suggest there are variations in the kind of care provided to people living with dementia across regions. In 2015/16, the percentage of people living with dementia in the community who received home care services ranged from 52% to 61% across Ontario’s 14 local health integration networks (LHINs). Of those who received these services, the average number of hours for personal support and homemaking services ranged from 93 to 179 across the 14 LHINs. These gaps and variations highlight the need for a quality standard for the care of people living with dementia in the community.

Based on evidence and expert consensus, this quality standard addresses key areas identified as having considerable potential for quality improvement in the care of community-dwelling people living with dementia in Ontario. The 10 quality statements that make up this standard each provide guidance on high-quality care, with accompanying indicators to help health care professionals and organizations measure their quality of care. Each statement also includes details on how its delivery impacts people living with dementia and their caregivers, health care professionals, community service providers, health care services, and community support services at large.

Principles Underpinning This Quality Standard

People living with dementia should receive care and services that are respectful of their human rights and dignity and that shared decision-making.

People living with dementia and their caregivers should be 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. Services should be provided in their preferred language. Language, a basic tool for communication, is an essential part of safety of care and needs to be considered throughout a person’s health care journey. For example, in predominantly Anglophone settings, services should be actively offered in French and other languages.

Care providers should be aware of the historical context of the lives of Canada’s Indigenous peoples and be sensitive to the impacts of intergenerational trauma and the physical, mental, emotional, and social harms experienced by Indigenous people, families, and communities.

A high-quality health system is one that provides good access, experience, and outcomes for everyone in Ontario, no matter where they live, what they have, or who they are.

How Success Can Be Measured

The Quality Standard Advisory Committee identified a small number of overarching goals for this quality standard. These have been mapped to indicators that may be used to assess quality of care provincially and locally.

How Success Can Be Measured Provincially

Rate of emergency department visits for people living with dementia in the community
Rate of hospitalizations for people living with dementia in the community
Average length of stay in hospital for people living with dementia in the community
Alternate-level-of-care days for people living with dementia in the community
Average length of stay in the community for people living with dementia

How Success Can Be Measured Locally

You may want to assess the quality of care you provide to people living with dementia in the community. You may also want to monitor your own quality improvement efforts. It may be possible to do this using your own clinical records, or you might need to collect additional data. We recommend the following list of potential indicators, some of which cannot be measured provincially using currently available data sources:

Percentage of people living with dementia in the community and their caregivers who each have optimized quality of life
Percentage of people living with dementia in the community who are confident with self-care
Percentage of caregivers of people living with dementia in the community who are confident with their ability to work collaboratively with people living with dementia to provide care based on their needs and preferences
Percentage of people living with dementia in the community and their caregivers who reported being satisfied or very satisfied with the care and services received in the community

In addition, each quality statement within the standard is accompanied by one or more indicators. These indicators are intended to guide the measurement of quality improvement efforts related to the implementation of the statement.

What Does It Mean for Patients and Caregivers?

As a caregiver, the complexities of navigating the healthcare system was one of the most challenging things I faced. I didn’t even know where to even begin. There wasn’t a consolidated place that I could find all the information I needed—whether it was about support groups, information sessions, tax benefits, legal concerns or health care services. Not even knowing what resources were available, was a huge stumbling block and I found it all very overwhelming and exhausting.  The sense of failing your loved one happens every day…you often wish you had done things differently.  For me, help and assistance in navigating is most significant—just having the knowledge of where to go and who can help along the way, can be so critical. Education and support targeted specifically for caregivers hooks you into a community of people. It is very important to have that connection with others because caregivers often feel quite isolated, especially since everyone’s journey is so unique. And as the saying goes, “It takes a village!”  I found it a very empowering experience to be a part of a provincial Quality Standards Advisory Committee and  to be able to make recommendations towards a much more effective standard of dementia care. It was great to have the privilege and very inspirational to work with such caring, understanding and committed professionals in the Health Care Field. This quality standard is an important piece of work because it is a template which can assist communities in developing a structured and integrated system for caregivers and those living with dementia—allowing for a planned, yet flexible journey of navigating through the health care system.

- Nimi Bowman, Dementia Care in the Community Quality Standard Advisory Committee, panel member

What Does It Mean for Providers?

Currently, dementia care is crisis driven, with health care system use that is often reactive rather than proactive. Diagnosis of dementia is typically made late and with poor coordination of care. Also, scarce geriatric resources results in care that is inequitably distributed across the province, resulting in delayed access to care and services and greater suffering experienced by persons and families living with dementia. There is a real need for establishing a standard of dementia care in Ontario. A standards-driven approach can help to guide the health care system and community-based services in implementation of appropriate practices and it can guide continuous quality improvement. I believe that the Dementia Care in the Community Quality Standard is an important first step towards transforming health care in our province to better meet the needs of older adults living with dementia. Translating these Quality Standards into the delivery of high quality care will raise the provincial standard of dementia care in Ontario.

- Linda Lee, co-chair, Dementia Care in the Community Quality Standard Advisory Committee

Timeline for this Quality Standard

This quality standard was completed in March 2018.

For more information, contact QualityStandards@HQOntario.ca.

Evidence to Improve Care