The Alzheimer Society Research Portal connects researchers with Canadians looking to participate in research studies. On this website, find active studies that you can participate in to help advance research on dementia.
This study explores the experiences of family and friends of long-term care residents. It focuses on how they experience stress, burden, and mental health challenges, and how a single-session online Acceptance and Commitment Therapy (ACT) or educational materials may help. We will use the information gathered from questionnaires and interventions to understand the effectiveness of these supports and to develop recommendations for improving resources, strategies, and interventions to better meet the needs of family and friends, helping them manage stress and maintain wellbeing while caring for someone in long-term care.
You are eligible to participate if you:
- are at least 18 years old
- currently reside in Canada
- have a family member or friend who currently lives in long-term care
- are not currently receiving psychological treatment
This study explores the experience of family and friend caregivers when they are supporting a person living with dementia to discharge from hospital including the emergency room. It focuses on how caregivers experience discharge planning processes and policies, how their perspectives and needs are considered at this key time, and the impacts upon the person they care for and themself in the 6 months after a hospital stay. We will used findings to develop recommendations to improve understanding of the role, needs and rights of caregivers as they care for people who live with dementia in the community.
Caregivers:
- are the primary family or friend caregiver of a person living with dementia who lives/lived in the community
- the care recipient was in hospital including the emergency room and discharged to the community within the last 3 years
- you provided care between 0-3 years ago
- you provided care in Ottawa or the surrounding 200 km
- you are comfortable taking part in a 60-minute interview in English, French or in a different language (translation services are available)
- the care recipient did not have an acute life limiting condition such as terminal cancer for the entire duration of your journey of providing care.
Social Workers
- are a social worker who currently or within the last 3 years worked with people living with dementia who are discharging or who discharged from a health care facility. This may include hospital and community-based social workers.
- you work in Ottawa or the surrounding 200 km
- you have worked a minimum of 3 months in this role
This research will examine the psychosocial impact on informal male caregivers of persons with dementia, focusing on the emotional, psychological, and social challenges they encounter while providing care. It explores the emotional, psychological, and social challenges they experience, as well as their coping strategies, support systems, and spiritual resources. A mixed-methods design will be used to examine the psychosocial experiences of informal male caregivers caring for dementia patients. Quantitative data will be collected using standardized caregiver burden and coping measures, and qualitative data will be gathered through open-ended questions to gain a deeper understanding of caregivers’ lived experiences and stressors.
- are a male
- between the ages of 41
- 70 years
- An informal (unpaid) caregiver of a family/friend diagnosed with dementia
-are currently providing, or have provided care and support for that individual
- are willing to complete questionnaires and answer open-ended questions about your caregiving experiences.
- are willing to do questionnaires and open-ended questions by phone or in person
This study aims to evaluate how older adults feel about doing a set of tasks that ask them to estimate the duration of various events and ask them to recall past memories or imagine future scenarios. This includes gathering information about the level of difficulty of the tasks and how manageable the duration of the study was. The data from this study will help design a research protocol for future research aimed at evaluating differences in time perception along the continuum of dementia. Findings may be published in a research journal or presented at research conferences.
You are eligible if you are: - at least 55 years of age - fluent in English - reside in Canada - haven’t been diagnosed with dementia - have normal or adjusted-normal vision and hearing - haven’t been diagnosed with a neurological disorder (e.g. Parkinson’s disease, brain tumour) - don't have a recent history of a medical condition that may affect your memory, thinking, or alertness (e.g. sleep apnea, hypertension) - don't have a recent history of a stroke - haven’t been diagnosed with a serious mental illness (e.g., schizophrenia, mania) - are not taking medication that may affect your memory, thinking, or alertness - don’t have a history of alcohol or drug abuse that affected your activities of daily life and/or required treatment
This study explores how adult day programs affect the lives of people living with dementia and their caregivers across several Canadian regions. Over time, we gather information about health, well-being, daily experiences, and quality of life of people living with dementia who attend day program and their caregivers. We also aim to learn about day programs themselves, such as their activities, staffing, challenges, and successes. By combining surveys, interviews, and focus groups, our program of research aims to understand what makes day programs helpful, where challenges exist, and how day program can better support families, and people who use them.
You are eligible to participate if you:
• Are an older adult living with dementia who attends or does not attend a day program
• You are a family/friend caregiver of someone living with dementia who attends or does not attend a day program
• Live in one of the participating regions (Ontario, Winnipeg MB, Calgary AB, or Interior BC)
• Are able to take part in a conversation or complete surveys, with support if needed
The objective of this study is to better understand caregivers’ perspectives regarding the pharmacological management of the behavioral and psychological symptoms of dementia (BPSD). While current recommendations are largely based on the opinions of healthcare professionals and experts, the viewpoint of caregivers remains underexplored. By better understanding their experience, we hope to contribute to improved guidelines and care for individuals with neurocognitive disorders.
Assistive technology products are things that help you function or carry out activities more easily by yourself. Products could be any devices, equipment, instruments, or software. Examples could be mobile phone apps that provide calendar reminders, switches that turn off stoves, or walkers.
Assistive technology services are activities or resources that help you to use or maintain assistive technology products. Services refer to assessment, training, and maintenance that help with choosing, using, and repairing assistive technology products.
Getting these products and services means having to contact different organizations. If these products and services could be bundled as one unit, it may help persons with dementia get them more easily and potentially reduce costs. Right now, policymakers need more information about providing assistive technologies as bundles.
The purpose of the study is to learn about your experiences with accessing and using products and services for managing dementia. This information will help us to know what should be included in bundles.
For persons with dementia: We would like to interview you now to understand your past and current experiences. We would also like to interview you each year for up to three years (for three interviews) to see how your experiences change over time. You may leave at any time.
For care partners: The purpose of the surveys is to learn about your views and experiences with accessing and using products and services for managing dementia. This information will help us to know what should be included in bundles. If interested, you may also take part in longitudinal interviews (two interviews, one annually) after the initial survey in year one to see how your experiences changed over time. You may leave at any time.
For healthcare providers: The purpose of the surveys is to learn about your views and experiences with assisting persons with dementia and care partners to access and use products and services for managing dementia. This information will help us to know what should be included in bundles and how delivery may be improved. If interested, you may also take part 6 / 10 in longitudinal interviews (two interviews, one annually) after completing the initial survey in year one to see how your experiences changed over time. You may leave at any time.
People with dementia:
- Are a Canadian resident who can speak English or French
- Live at home (not care home)
- Able to respond to questions about yourself and your assistive technology product and service use
- Have a score 25 or below on the Montreal Cognitive Assessment (will be conducted by research team prior to interview)
- Able to provide consent (or assent, with a substitute decision maker providing consent)
Care partners:
- Are a Canadian resident who can speak English or French
- Family or friend who provides 5 hours or more of support a week for someone with dementia living at home (not a care home)
- Able to respond to questions about yourself and your assistive technology product and service use - Able to provide consent Healthcare providers:
- Are a Canadian resident who can speak English or French
- A healthcare provider (such as physician, nurse, therapist, social worker) who works with 8 / 10 persons with dementia
Hearing loss is the third most common chronic health condition among people 65 and older and increases the risk of social isolation, depression, communication difficulties and dementia. Dementia risk may be reduced through hearing rehabilitation, and it is critical to develop tools for identifying hearing loss and its impact on communication. The Hearing and Functioning in Everyday Life Questionnaire (HFEQ) is a measure to identify hearing loss and everyday life functioning, not yet been evaluated for people with combined hearing loss and cognitive impairment. To bridge this gap, the aim is to evaluate the HFEQ for this group. The study has a cross-sectional observational study design. Adults over 60 years, with hearing loss and with and without cognitive impairment will be recruited. Data collection will include a cognitive and hearing assessment, assessment of conversation effectiveness and efficiency, hearing and general health history and five questionnaires (HFEQ, the Life-Space questionnaire, the Social Functioning in Dementia scale, and the PROMIS anxiety and depression scales).
• Are 60 years or older
• Have hearing loss
• Experience cognitive complaints (subjective memory complaints, mild cognitive impairment, or dementia) or,
• Experience no changes in cognitive function
YOD is dementia diagnosed before the age of 65 and consists of approximately 2-8% of all Canadian dementia cases (n = 28,000) (Alzheimer’s Society of Canada, 2023), whereas late onset dementia is dementia diagnosed after the age of 65 and occurs much more frequently than young onset dementia (n = 597,000) (Alzheimer Society of Canada, 2023). Research has found caregivers for persons living with YOD experience higher levels of caregiver related stress, feelings of social isolation, and psychological and financial hardships. Further, caregivers for persons living with young onset dementia are more likely to be negatively affected by stigma associated with dementia in comparison to caregivers of older adults with dementia (Blake & Hopper, 2022; Chiari et al., 2022; Climans et al., 2023). A diagnosis of young onset dementia is atypical within one’s life trajectory, with many individuals being employed full-time at the time of diagnosis. As such young onset dementia caregivers often face unique challenges such as balancing the demands of their caregiving roles with employment, becoming the sole providers financially (Flynn & Mulchay, 2015), and potentially having young children still at home (Lockridge & Simpson, 2013; Svanberg et al., 2011). Consequently, it is imperative for resources to be designed to directly meet the needs of young onset dementia caregivers. Within Canada, most community-based interventions are designed for older adults with dementia and their families, with limited programs designed specifically for persons living with young onset dementia and their caregivers (Alzheimer Society Canada, 2018; Giebel et al., 2020). As a result, persons living with YOD and caregivers/care partners often feel unsupported. Therefore, the purpose of this qualitative study will be to understand the experiences and needs of service providers when implementing services for individuals with young onset dementia and their families. Findings will be used to inform the development of more responsive and appropriate community-based supports.
You are eligible to participate if you:
- 18 years or older
- Are involved within (i.e.,designing, implementing, or evaluating) programs for persons living with dementia and/or their family caregivers
- Understand the elements (e.g., activity type, target population) that comprise program(s) designed for persons living with dementia and/or their family caregivers
-Live and work within Canada
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