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1.  Caregiver- and Patient-Directed Interventions for Dementia 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site,, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
This report features the evidence-based analysis on caregiver- and patient-directed interventions for dementia and is broken down into 4 sections:
Caregiver-Directed Interventions for Dementia
Patient-Directed Interventions for Dementia
Economic Analysis of Caregiver- and Patient-Directed Interventions for Dementia
Caregiver-Directed Interventions for Dementia
To identify interventions that may be effective in supporting the well-being of unpaid caregivers of seniors with dementia living in the community.
Clinical Need: Target Population and Condition
Dementia is a progressive and largely irreversible syndrome that is characterized by a loss of cognitive function severe enough to impact social or occupational functioning. The components of cognitive function affected include memory and learning, attention, concentration and orientation, problem-solving, calculation, language, and geographic orientation. Dementia was identified as one of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home, in that approximately 90% of individuals diagnosed with dementia will be institutionalized before death. In addition, cognitive decline linked to dementia is one of the most commonly cited reasons for institutionalization.
Prevalence estimates of dementia in the Ontario population have largely been extrapolated from the Canadian Study of Health and Aging conducted in 1991. Based on these estimates, it is projected that there will be approximately 165,000 dementia cases in Ontario in the year 2008, and by 2010 the number of cases will increase by nearly 17% over 2005 levels. By 2020 the number of cases is expected to increase by nearly 55%, due to a rise in the number of people in the age categories with the highest prevalence (85+). With the increase in the aging population, dementia will continue to have a significant economic impact on the Canadian health care system. In 1991, the total costs associated with dementia in Canada were $3.9 billion (Cdn) with $2.18 billion coming from LTC.
Caregivers play a crucial role in the management of individuals with dementia because of the high level of dependency and morbidity associated with the condition. It has been documented that a greater demand is faced by dementia caregivers compared with caregivers of persons with other chronic diseases. The increased burden of caregiving contributes to a host of chronic health problems seen among many informal caregivers of persons with dementia. Much of this burden results from managing the behavioural and psychological symptoms of dementia (BPSD), which have been established as a predictor of institutionalization for elderly patients with dementia.
It is recognized that for some patients with dementia, an LTC facility can provide the most appropriate care; however, many patients move into LTC unnecessarily. For individuals with dementia to remain in the community longer, caregivers require many types of formal and informal support services to alleviate the stress of caregiving. These include both respite care and psychosocial interventions. Psychosocial interventions encompass a broad range of interventions such as psychoeducational interventions, counseling, supportive therapy, and behavioural interventions.
Assuming that 50% of persons with dementia live in the community, a conservative estimate of the number of informal caregivers in Ontario is 82,500. Accounting for the fact that 29% of people with dementia live alone, this leaves a remaining estimate of 58,575 Ontarians providing care for a person with dementia with whom they reside.
Description of Interventions
The 2 main categories of caregiver-directed interventions examined in this review are respite care and psychosocial interventions. Respite care is defined as a break or relief for the caregiver. In most cases, respite is provided in the home, through day programs, or at institutions (usually 30 days or less). Depending on a caregiver’s needs, respite services will vary in delivery and duration. Respite care is carried out by a variety of individuals, including paid staff, volunteers, family, or friends.
Psychosocial interventions encompass a broad range of interventions and have been classified in various ways in the literature. This review will examine educational, behavioural, dementia-specific, supportive, and coping interventions. The analysis focuses on behavioural interventions, that is, those designed to help the caregiver manage BPSD. As described earlier, BPSD are one of the most challenging aspects of caring for a senior with dementia, causing an increase in caregiver burden. The analysis also examines multicomponent interventions, which include at least 2 of the above-mentioned interventions.
Methods of Evidence-Based Analysis
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials (RCTs) that examined the effectiveness of interventions for caregivers of dementia patients.
Section 2.1
Are respite care services effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Do respite care services impact on rates of institutionalization of these seniors?
Section 2.2
Which psychosocial interventions are effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Which interventions reduce the risk for institutionalization of seniors with dementia?
Outcomes of Interest
any quantitative measure of caregiver psychological health, including caregiver burden, depression, quality of life, well-being, strain, mastery (taking control of one’s situation), reactivity to behaviour problems, etc.;
rate of institutionalization; and
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Conclusions in Table 1 are drawn from Sections 2.1 and 2.2 of the report.
Summary of Conclusions on Caregiver-Directed Interventions
There is limited evidence from RCTs that respite care is effective in improving outcomes for those caring for seniors with dementia.
There is considerable qualitative evidence of the perceived benefits of respite care.
Respite care is known as one of the key formal support services for alleviating caregiver burden in those caring for dementia patients.
Respite care services need to be tailored to individual caregiver needs as there are vast differences among caregivers and patients with dementia (severity, type of dementia, amount of informal/formal support available, housing situation, etc.)
There is moderate- to high-quality evidence that individual behavioural interventions (≥ 6 sessions), directed towards the caregiver (or combined with the patient) are effective in improving psychological health in dementia caregivers.
There is moderate- to high-quality evidence that multicomponent interventions improve caregiver psychosocial health and may affect rates of institutionalization of dementia patients.
RCT indicates randomized controlled trial.
Patient-Directed Interventions for Dementia
The section on patient-directed interventions for dementia is broken down into 4 subsections with the following questions:
3.1 Physical Exercise for Seniors with Dementia – Secondary Prevention
What is the effectiveness of physical exercise for the improvement or maintenance of basic activities of daily living (ADLs), such as eating, bathing, toileting, and functional ability, in seniors with mild to moderate dementia?
3.2 Nonpharmacologic and Nonexercise Interventions to Improve Cognitive Functioning in Seniors With Dementia – Secondary Prevention
What is the effectiveness of nonpharmacologic interventions to improve cognitive functioning in seniors with mild to moderate dementia?
3.3 Physical Exercise for Delaying the Onset of Dementia – Primary Prevention
Can exercise decrease the risk of subsequent cognitive decline/dementia?
3.4 Cognitive Interventions for Delaying the Onset of Dementia – Primary Prevention
Does cognitive training decrease the risk of cognitive impairment, deterioration in the performance of basic ADLs or instrumental activities of daily living (IADLs),1 or incidence of dementia in seniors with good cognitive and physical functioning?
Clinical Need: Target Population and Condition
Secondary Prevention2
Physical deterioration is linked to dementia. This is thought to be due to reduced muscle mass leading to decreased activity levels and muscle atrophy, increasing the potential for unsafe mobility while performing basic ADLs such as eating, bathing, toileting, and functional ability.
Improved physical conditioning for seniors with dementia may extend their independent mobility and maintain performance of ADL.
Nonpharmacologic and Nonexercise Interventions
Cognitive impairments, including memory problems, are a defining feature of dementia. These impairments can lead to anxiety, depression, and withdrawal from activities. The impact of these cognitive problems on daily activities increases pressure on caregivers.
Cognitive interventions aim to improve these impairments in people with mild to moderate dementia.
Primary Prevention3
Various vascular risk factors have been found to contribute to the development of dementia (e.g., hypertension, hypercholesterolemia, diabetes, overweight).
Physical exercise is important in promoting overall and vascular health. However, it is unclear whether physical exercise can decrease the risk of cognitive decline/dementia.
Nonpharmacologic and Nonexercise Interventions
Having more years of education (i.e., a higher cognitive reserve) is associated with a lower prevalence of dementia in crossectional population-based studies and a lower incidence of dementia in cohorts followed longitudinally. However, it is unclear whether cognitive training can increase cognitive reserve or decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs or reduce the incidence of dementia.
Description of Interventions
Physical exercise and nonpharmacologic/nonexercise interventions (e.g., cognitive training) for the primary and secondary prevention of dementia are assessed in this review.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and RCTs that examined the effectiveness, safety and cost effectiveness of exercise and cognitive interventions for the primary and secondary prevention of dementia.
Section 3.1: What is the effectiveness of physical exercise for the improvement or maintenance of ADLs in seniors with mild to moderate dementia?
Section 3.2: What is the effectiveness of nonpharmacologic/nonexercise interventions to improve cognitive functioning in seniors with mild to moderate dementia?
Section 3.3: Can exercise decrease the risk of subsequent cognitive decline/dementia?
Section 3.4: Does cognitive training decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs, or reduce the incidence of dementia in seniors with good cognitive and physical functioning?
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology. As per GRADE the following definitions apply:
Summary of Findings
Table 2 summarizes the conclusions from Sections 3.1 through 3.4.
Summary of Conclusions on Patient-Directed Interventions*
Previous systematic review indicated that “cognitive training” is not effective in patients with dementia.
A recent RCT suggests that CST (up to 7 weeks) is effective for improving cognitive function and quality of life in patients with dementia.
Regular leisure time physical activity in midlife is associated with a reduced risk of dementia in later life (mean follow-up 21 years).
Regular physical activity in seniors is associated with a reduced risk of cognitive decline (mean follow-up 2 years).
Regular physical activity in seniors is associated with a reduced risk of dementia (mean follow-up 6–7 years).
Evidence that cognitive training for specific functions (memory, reasoning, and speed of processing) produces improvements in these specific domains.
Limited inconclusive evidence that cognitive training can offset deterioration in the performance of self-reported IADL scores and performance assessments.
1° indicates primary; 2°, secondary; CST, cognitive stimulation therapy; IADL, instrumental activities of daily living; RCT, randomized controlled trial.
Benefit/Risk Analysis
As per the GRADE Working Group, the overall recommendations consider 4 main factors:
the trade-offs, taking into account the estimated size of the effect for the main outcome, the confidence limits around those estimates, and the relative value placed on the outcome;
the quality of the evidence;
translation of the evidence into practice in a specific setting, taking into consideration important factors that could be expected to modify the size of the expected effects such as proximity to a hospital or availability of necessary expertise; and
uncertainty about the baseline risk for the population of interest.
The GRADE Working Group also recommends that incremental costs of health care alternatives should be considered explicitly alongside the expected health benefits and harms. Recommendations rely on judgments about the value of the incremental health benefits in relation to the incremental costs. The last column in Table 3 reflects the overall trade-off between benefits and harms (adverse events) and incorporates any risk/uncertainty (cost-effectiveness).
Overall Summary Statement of the Benefit and Risk for Patient-Directed Interventions*
Economic Analysis
Budget Impact Analysis of Effective Interventions for Dementia
Caregiver-directed behavioural techniques and patient-directed exercise programs were found to be effective when assessing mild to moderate dementia outcomes in seniors living in the community. Therefore, an annual budget impact was calculated based on eligible seniors in the community with mild and moderate dementia and their respective caregivers who were willing to participate in interventional home sessions. Table 4 describes the annual budget impact for these interventions.
Annual Budget Impact (2008 Canadian Dollars)
Assumed 7% prevalence of dementia aged 65+ in Ontario.
Assumed 8 weekly sessions plus 4 monthly phone calls.
Assumed 12 weekly sessions plus biweekly sessions thereafter (total of 20).
Assumed 2 sessions per week for first 5 weeks. Assumed 90% of seniors in the community with dementia have mild to moderate disease. Assumed 4.5% of seniors 65+ are in long-term care, and the remainder are in the community. Assumed a rate of participation of 60% for both patients and caregivers and of 41% for patient-directed exercise. Assumed 100% compliance since intervention administered at the home. Cost for trained staff from Ministry of Health and Long-Term Care data source. Assumed cost of personal support worker to be equivalent to in-home support. Cost for recreation therapist from Alberta government Website.
Note: This budget impact analysis was calculated for the first year after introducing the interventions from the Ministry of Health and Long-Term Care perspective using prevalence data only. Prevalence estimates are for seniors in the community with mild to moderate dementia and their respective caregivers who are willing to participate in an interventional session administered at the home setting. Incidence and mortality rates were not factored in. Current expenditures in the province are unknown and therefore were not included in the analysis. Numbers may change based on population trends, rate of intervention uptake, trends in current programs in place in the province, and assumptions on costs. The number of patients was based on patients likely to access these interventions in Ontario based on assumptions stated below from the literature. An expert panel confirmed resource consumption.
PMCID: PMC3377513  PMID: 23074509
2.  Predictors of Depressive Symptoms in Caregivers of Patients with Heart Failure 
Millions of family members deliver informal care and support to patients with heart failure (HF). Caregivers of patients with HF suffer from depressive symptoms, but factors associated with depressive symptoms are unknown. The purposes of this study were (1) to examine differences between caregivers with and without depressive symptoms in patients’ characteristics and caregivers’ functional status, caregiving burden (time devoted to caregiving, difficulty of caregiving tasks, and overall perceived caregiving distress), and perceived control; and (2) to determine predictors of depressive symptoms of caregivers.
A total of 109 caregivers (mean age of 57 years; spousal caregiver 79%) and patients with HF participated in this study. Depressive symptoms, perceived control, and functional status of both patients and caregivers were assessed using the Beck Depression Inventory-II (BDI-II), the Control Attitudes Scale-Revised, and the Duke Activity Status Index, respectively. Caregivers’ burden (time and difficulty of caregiving tasks and burden) were assessed using the Oberst Caregiving Burden Scale, and the Zarit Burden Interview.
The 27.5% of HF caregivers with depressive symptoms (BDI-II ≥ 14) had poorer functional status, lower perceived control, higher perceived caregiving distress, experienced more caregiving difficulty and spent more time in caregiving tasks than caregivers without depressive symptoms. Controlling for age and gender in a multiple regression, caregivers’ own functional disability (sβ = -.307, P < .001), perceived control (sβ = -.304, P < .001), and caregiver burden (sβ =.316, P = .002) explained 45% of the variance in caregivers’ depressive symptoms. Patients’ NYHA class and functional status did not predict caregivers’ depressive symptoms.
Caregivers’ poor functional status, overall perception of caregiving distress, and perceived control were associated with depressive symptoms. Depressed caregivers of patients with HF may benefit from interventions that improve caregivers’ perceived control, address the caregiving burden and improve or assist with caregivers’ functional status.
PMCID: PMC2924771  PMID: 20714239
Depressive symptoms; Family caregivers; Heart failure; Psychological stress
3.  Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study 
PLoS Medicine  2012;9(2):e1001173.
In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patient's life are described.
In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life.
Methods and Findings
Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.
Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
Please see later in the article for the Editors' Summary
Editors' Summary
End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo, and, if mentioned, are often referred to as “palliative care.” There are detailed definitions of palliative care, but in essence, the purpose of palliative care is to relieve any suffering in patients who are dying from progressive illness and to provide the best possible quality of life for both the patient and his or her family. In order to achieve this aim, both pharmacological and non-pharmacological management is necessary, with the latter taking a central role. Recently, a European Commission Seventh Framework Programme project, OPCARE9, aimed to improve the care of dying patients in Europe and beyond by optimizing research and clinical care for patients with cancer in the last days of their life, especially regarding well-being and comfort as death becomes imminent.
Why Was This Study Done?
There is now a growing literature base in non-pharmacological management at the end of an individual's life, particularly in relation to psychological, ethical, and communication issues as well as family-focused and culturally appropriate care. Despite this progress, there is currently little systematic knowledge in how health workers use such non-pharmacological approaches in their efforts to maximize well-being and comfort in patients experiencing their very last days of life. Therefore, in order to advance knowledge in this important clinical area, in this study the researchers reviewed and identified the variety of non-pharmacological caregiving activities performed by different professionals in the last days and hours of life for patients with cancer (and their families) in palliative care settings in the countries that participated in OPCARE9.
What Did the Researchers Do and Find?
The researchers modified an anthropological approach to collect relevant information in participating European countries—Germany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK—and Argentina and New Zealand. Staff in palliative care settings generated a list of non-pharmacological caregiving activities after discussion about which interventions and activities they carried out with patients and families during the last days of life. This preliminary list of statements was added to if staff performed a new activity when in contact with patients or the patients' family during the last days of life. The researchers then used computer-assisted qualitative data analysis to code the statements.
Using this methodology, the researchers analyzed 914 statements of caregiving activities from 16 different facilities in nine countries. The greatest number of activities described some type of caregiving for an individual carried out through contact with his or her body, such as attending to diverse bodily needs (such as cleaning and moisturizing) while maintaining comfort and dignity. Listening, talking with, and understanding (particularly between professionals and the family) was the next most frequent activity, followed by creating an esthetical, safe, and pleasing environment for the dying person and his or her family, and necessary “backstage” activities, such as organizing paperwork or care plans. Other common activities included observing and assessing, which were often described as being carried out simultaneously with other interventions; just being present (described as increasingly important close to death); performing rituals surrounding death and dying (usually directed to families); guiding and facilitating (encompassing support in a compassionate manner); and finally, giving oral and written information and advice (usually to families).
What Do These Findings Mean?
These findings show that providing for fundamental human needs close to death is complex and sophisticated but ultimately integrated into a common theme of caregiving. This study also identifies a number of areas needing further investigation, such as enhancing the sensory and general environment for the patient and family. Finally, this study suggests that developing a greater level of detail, such as improved terminology for end-of-life care, would enhance appreciation of the nuances and complexity present in non-pharmacological care provision during the last days of life, with potential benefit for clinical practice, teaching, and research.
Additional Information
Please access these websites via the online version of this summary at
The OPCARE9 website details more information about this end-of-life care initiative
The World Health Organization website defines palliative care, and Wikipedia gives more information (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
NHS Choices also provides information about end-of-life care
PMCID: PMC3279347  PMID: 22347815
4.  Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study 
Research interest in the quality of life (QOL) of persons with multiple sclerosis (MS) has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care. The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables.
Consecutive MS clinic attendees were assessed with the 26 – item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness.
The 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P < 0.01), but higher QOL than the patients. When the scores were corrected for patients' depression and disability, caregivers had similar QOL with the general population group for four domains. Using corrected scores, MS caregivers had lower scores than diabetic and psychiatric caregivers in the physical, psychological and social relations domains. Majority expressed negative attitudes to MS. Caregiver QOL was more affected by their fear of having MS than their feelings about the illness and caregiving role. Caregiver attitudes had mostly no significant impact on their proxy ratings of patients' QOL. The significant predictor of caregivers' overall QOL was their impression of patients' QOL.
Caregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of illness and less education. In particular, attention to patients' depression and disability could improve caregivers' QOL. Caregivers need specific programs to address fear of having MS, negative attitudes to illness and their unmet needs.
PMCID: PMC2576463  PMID: 18840287
5.  Attitudes Toward Assisted Suicide and Life-Prolonging Measures in Swiss ALS Patients and Their Caregivers 
Objectives: In Switzerland, assisted suicide (AS) is legal, provided that the person seeking assistance has decisional capacity and the person assisting is not motivated by reasons of self-interest. However, in this particular setting nothing is known about patients’ and their caregivers’ attitudes toward AS and life-prolonging measures. Methods: Data was retrieved through validated questionnaires and personal interviews in 33 patients and their caregivers covering the following domains: physical function according to the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R), demographic data, quality of life, anxiety, depression, social situation, spirituality, burden of disease, life-prolonging, and life-shortening acts. Results: In patients the median time after diagnosis was 9 months (2–90) and the median Amyotrophic Lateral Sclerosis (ALS) FRS-R score was 37 (22–48). The majority of patients (94%; n = 31) had no desire to hasten death. Patients’ and caregivers’ attitudes toward Percutaneous Endoscopic Gastrostomy (PEG) and Non-Invasive Ventilation (NIV) differed. Significantly more patients than caregivers (21.2 versus 3.1%) stated that they were against NIV (p = 0.049) and against PEG (27.3 versus 3.1%; p = 0.031). Answers regarding tracheotomy were not significantly different (p = 0.139). Caregivers scored significantly higher levels of “suffering” (p = 0.007), “loneliness” (p = 0.006), and “emotional distress” answering the questionnaires (p < 0.001). Suffering (p < 0.026) and loneliness (p < 0.016) were related to the score of the Hospital Anxiety and Depression Scale (HADS) in patients. Conclusion: A liberal legal setting does not necessarily promote the wish for AS. However, the desire to discuss AS is prevalent in ALS patients. There is a higher level of suffering and loneliness on the caregivers’ side. A longitudinal study is warranted.
PMCID: PMC3481003  PMID: 23112784
ALS; motor neuron disease; quality of life; depression; end of life
6.  Social Isolation in Community-Dwelling Seniors 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site,, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
Objective of the Evidence-Based Analysis
The objective was to systematically review interventions aimed at preventing or reducing social isolation and loneliness in community-dwelling seniors, that is, persons ≥ 65 years of age who are not living in long-term care institutions. The analyses focused on the following questions:
Are interventions to reduce social isolation and/or loneliness effective?
Do these interventions improve health, well-being, and/or quality of life?
Do these interventions impact on independent community living by delaying or preventing functional decline or disability?
Do the interventions impact on health care utilization, such as physician visits, emergency visits, hospitalization, or admission to long-term care?
Background: Target Population and Condition
Social and family relationships are a core element of quality of life for seniors, and these relationships have been ranked second, next to health, as the most important area of life. Several related concepts—reduced social contact, being alone, isolation, and feelings of loneliness—have all been associated with a reduced quality of life in older people. Social isolation and loneliness have also been associated with a number of negative outcomes such as poor health, maladaptive behaviour, and depressed mood. Higher levels of loneliness have also been associated with increased likelihood of institutionalization.
Note: It is recognized that the terms “senior” and “elderly” carry a range of meanings for different audiences; this report generally uses the former, but the terms are treated here as essentially interchangeable.
Methods of the Evidence-Based Analysis
The scientific evidence base was evaluated through a systematic literature review. The literature searches were conducted with several computerized bibliographic databases for literature published between January 1980 and February 2008. The search was restricted to English-language reports on human studies and excluded letters, comments and editorials, and case reports. Journal articles eligible for inclusion in the review included those that reported on single, focused interventions directed towards or evaluating social isolation or loneliness; included, in whole or in part, community-dwelling seniors (≥ 65 years); included some quantitative outcome measure on social isolation or loneliness; and included a comparative group. Assessments of current practices were obtained through consultations with various individuals and agencies including the Ontario Community Care Access Centres and the Ontario Assistive Devices Program. An Ontario-based budget impact was also assessed for the identified effective interventions for social isolation.
A systematic review of the published literature focusing on interventions for social isolation and loneliness in community-dwelling seniors identified 11 quantitative studies. The studies involved European or American populations with diverse recruitment strategies, intervention objectives, and limited follow-up, with cohorts from 10 to 15 years ago involving mainly elderly women less than 75 years of age. The studies involved 2 classes of interventions: in-person group support activities and technology-assisted interventions. These were delivered to diverse targeted groups of seniors such as those with mental distress, physically inactive seniors, low-income groups, and informal caregivers. The interventions were primarily focused on behaviour-based change. Modifying factors (client attitude or preference) and process issues (targeting methods of at-risk subjects, delivery methods, and settings) influenced intervention participation and outcomes.
Both classes of interventions were found to reduce social isolation and loneliness in seniors. Social support groups were found to effectively decrease social isolation for seniors on wait lists for senior apartments and those living in senior citizen apartments. Community-based exercise programs featuring health and wellness for physically inactive community-dwelling seniors also effectively reduced loneliness. Rehabilitation for mild/moderate hearing loss was effective in improving communication disabilities and reducing loneliness in seniors. Interventions evaluated for informal caregivers of seniors with dementia, however, had limited effectiveness for social isolation or loneliness.
Research into interventions for social isolation in seniors has not been broadly based, relative to the diverse personal, social, health, economic, and environmentally interrelated factors potentially affecting isolation. Although rehabilitation for hearing-related disability was evaluated, the systematic review did not locate research on interventions for other common causes of aging-related disability and loneliness, such as vision loss or mobility declines. Despite recent technological advances in e-health or telehealth, controlled studies evaluating technology-assisted interventions for social isolation have examined only basic technologies such as phone- or computer-mediated support groups.
Although effective interventions were identified for social isolation and loneliness in community-dwelling seniors, they were directed at specifically targeted groups and involved only a few of the many potential causes of social isolation. Little research has been directed at identifying effective interventions that influence the social isolation and other burdens imposed upon caregivers, in spite of the key role that caregivers assume in caring for seniors. The evidence on technology-assisted interventions and their effects on the social health and well-being of seniors and their caregivers is limited, but increasing demand for home health care and the need for efficiencies warrant further exploration. Interventions for social isolation in community-dwelling seniors need to be researched more broadly in order to develop effective, appropriate, and comprehensive strategies for at-risk populations.
PMCID: PMC3377559  PMID: 23074510
7.  Life satisfaction two-years after stroke onset: the effects of gender, sex occupational status, memory function and quality of life among stroke patients (Newsqol) and their family caregivers (Whoqol-bref) in Luxembourg 
BMC Neurology  2012;12:105.
Life satisfaction (LS) of cerebrovascular disease survivors and their family caregivers may relate to socioeconomic factors, impaired functions, health-related quality of life (QoL), but their respective influences remain unclear. This study assessed, two years post-stroke onset, the effects of these factors on patients’ LS and family caregivers’ LS in Luxembourg.
All stroke patients admitted to all hospitals in Luxembourg were identified by the ‘Inspection Général de la Sécurité Sociale’ using the only national system database for care expenditure reimbursement. Their diagnosis was confirmed by medical investigator. The sample included ninety four patients living at home having given consent (mean age 65.5 years) and sixty two main caregivers (mean age 59.3 years). Questionnaires were completed during face-to-face interviews. LS was assessed via European single question (range 1–10), survivors’ QoL via Newsqol (11 dimensions), and caregivers’ QoL via Whoqol-bref (4 domains) (range 0–100). Data were analysed using multiple regression models.
Two years after stroke onset, 44.7% of patients suffered from impaired sensory function, 35.1% from impaired motor function, and 31.9% from impaired memory function. Mean patient’ LS was 7.1/10 (SD 1.9). It was higher in women (+12.4) and lower among unemployed socioeconomically active patients (−13.1, vs. retired people). Adjusted for sex, occupation, impaired motor and memory functions, LS positively correlated with scores of Newsqol feelings, sleep, emotion, cognition and pain dimensions (slopes 0.20 to 0.31), but did not correlate with those of caregivers’ Whoqol-bref domains. Family caregiver’ LS was 7.2 (SD 1.7). It was lower in those with patients suffering from impaired memory function (−12.8) as well as from feelings and emotion issues (slopes 0.22). It was associated with all caregivers’ Whoqol-bref domains (physical health, psychological health, environment, and social relationships) (slopes 0.53 to 0.68).
Two-year post-cerebrovascular disease patient’ LS was associated with gender, occupation, and impaired memory function. It correlated with feelings, sleep, emotion, cognition, and pain issues. Family caregivers of patients with impaired memory function had lower LS. Family caregiver’ LS correlated with dimensions of patients’ feelings (less independent, yourself, life changed, depressed, useless, less control because of stroke) and emotion (get more emotional, fear of another stroke or to become dependent on others), and with their own QoL. LS, Newsqol, and Whoqol appeared to be appropriate tools. Our findings may be useful for policy makers in relation to family and medical-social issues of stroke home-based rehabilitation.
PMCID: PMC3551740  PMID: 23009364
Cerebrovascular disease; Life satisfaction; Quality of life; Newsqol; Whoqol-bref; Post-stroke patients; Family caregivers
8.  Economic and Social Changes Among Distressed Family Caregivers of Lung Cancer Patients 
Although costs of lung cancer care have been documented, economic and social changes among lung cancer patients’ family caregivers have yet to be fully examined. In addition, research has not focused on caregivers with greater need for support services. This study examined various economic and social changes among distressed family caregivers of lung cancer patients during the initial months of cancer care in the United States.
Lung cancer patients’ primary family caregivers with significant anxiety or depressive symptoms were recruited from three medical centers within 12 weeks of the patient’s new oncology visit. Caregivers (N=83) reported demographic and medical information and caregiving burden at baseline. Seventy-four caregivers reported anxiety and depressive symptoms and economic and social changes three months later.
Seventy-four percent of distressed caregivers experienced one or more adverse economic or social changes since the patient’s illness. Common changes included caregivers’ disengagement from most social and leisure activities (56%) and, among employed caregivers (n=49), reduced hours of work (45%). In 18% of cases, a family member quit work or made another major lifestyle change due to caregiving. Additionally, 28% of caregivers reported losing the main source of family income, and 18% reported losing most or all of the family savings. Loss of the main source of family income and disengagement from most social and leisure activities predicted greater caregiver distress.
Findings suggest that distressed caregivers of lung cancer patients experience high rates of adverse economic and social changes that warrant clinical and research attention.
PMCID: PMC3560318  PMID: 22945881
lung cancer; family caregiving; economic; financial; employment; psychological distress
9.  Positive aspects of caregiving in schizophrenia: A review 
World Journal of Psychiatry  2012;2(3):43-48.
Schizophrenia is a severe mental illness which is associated with significant consequences for both the patients and their relatives. Due to chronicity of the illness, the relatives of patients of schizophrenia have to bear the main brunt of the illness. Studies across the world have evaluated various aspects of caregiving and caregivers such as burden, coping, quality of life, social support, expressed emotions, and psychological morbidity. In general the research has looked at caregiving as a negative phenomenon, however, now it is increasingly recognised that caregiving is not only associated with negative consequences only, also experience subjective gains and satisfaction. This review focus on the conceptual issues, instruments available to assess the positive aspects of caregiving and the various correlates of positive aspects of caregiving reported in relation to schizophrenia. The positive aspect of caregiving has been variously measured as positive caregiving experience, caregiving satisfaction, caregiving gains and finding meaning through caregiving scale and positive aspects of caregiving experience. Studies suggests that caregivers of patients with schizophrenia and psychotic disorders experience caregiving gains (in the form of becoming more sensitive to persons with disabilities, clarity about their priorities in life and a greater sense of inner strength), experience good aspects of relationship with the patient, do have personal positive experiences. Some of the studies suggest that those who experience greater negative caregiving experience also do experience positive caregiving experience.
PMCID: PMC3782175  PMID: 24175167
Schizophrenia; Caregiving; Positive aspects
10.  Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients’ behavioral changes than physical disability: a comparative study 
BMC Neurology  2012;12:156.
Behavioral changes in patients with amyotrophic lateral sclerosis (ALS) mirror those found in frontotemporal dementia (FTD). Considering the high rate of neuropsychiatric symptoms found in ALS patients, this paper examines whether caregiver burden is associated with behavioral changes over and above the physical disability of patients with ALS, and if the presence of caregivers’ depression, anxiety and stress also impacts on caregiver burden.
140 caregivers of patients with ALS participated in a postal survey investigating patients’ neuropsychiatric symptoms (Cambridge Behaviour Inventory Revised CBI-R), motor function (Amyotrophic Lateral Sclerosis Functional Rating Scale Revised - ALSFRS-R), caregiver burden (Zarit Burden Interview), and caregiver mood (Depression, Anxiety and Stress Scale- DASS21). Seventy four percent of them were caregivers of patients with limb onset and 25.7% were caregivers of patients with bulbar onset.
Moderate to severe behavioral changes were reported in 10-40% of patients with ALS. The levels of depression, anxiety and stress in the caregivers reached 20%. Burden was high in 48% of the caregivers. The strongest predictor of high caregiver burden was ALS patients’ abnormal behavior rather than physical disability, with an odds ratio of 1.4, followed by caregivers’ stress.
Our study has identified that behavioral changes (e.g. disinhibition, impulsivity) and caregiver stress have greater impact on caregiver burden than level and pattern of physical disability.
PMCID: PMC3541170  PMID: 23216745
ALS; Behavioral changes; FTD; Caregiver burden
11.  Training carers of stroke patients: randomised controlled trial 
BMJ : British Medical Journal  2004;328(7448):1099.
Background Informal care givers support disabled stroke patients at home but receive little training for the caregiving role.
Objective To evaluate the effectiveness of training care givers in reducing burden of stroke in patients and their care givers.
Design A single, blind, randomised controlled trial.
Setting Stroke rehabilitation unit.
Subjects 300 stroke patients and their care givers.
Interventions Training care givers in basic nursing and facilitation of personal care techniques.
Main outcome measures Cost to health and social services, caregiving burden, patients' and care givers' functional status (Barthel index, Frenchay activities index), psychological state (hospital anxiety and depression score), quality of life (EuroQol visual analogue scale) and patients' institutionalisation or mortality at one year.
Results Patients were comparable for age (median 76 years; interquartile range 70-82 years), sex (53% men), and severity of stroke (median Barthel index 8; interquartile range 4-12). The costs of care over one year for patients whose care givers had received training were significantly lower (£10 133 v £13 794 ($18 087 v $24 619; €15 204 v €20 697); P = 0.001). Trained care givers experienced less caregiving burden (care giver burden score 32 v 41; P = 0.0001), anxiety (anxiety score 3 v 4; P = 0.0001) or depression (depression score 2 v 3; P = 0.0001) and had a higher quality of life (EuroQol score 80 v 70; P = 0.001). Patients' mortality, institutionalisation, and disability were not influenced by caregiver training. However, patients reported less anxiety (3 v 4.5; P < 0.0001) and depression (3 v 4; P < 0.0001) and better quality of life (65 v 60; P = 0.009) in the caregiver training group.
Conclusion Training care givers during patients' rehabilitation reduced costs and caregiver burden while improving psychosocial outcomes in care givers and patients at one year.
PMCID: PMC406319  PMID: 15130977
12.  Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey 
BMC Cancer  2014;14(1):541.
Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient (spouse/partner, etc.) are related to these experiences.
In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN) to 1–3 of their caregivers.
A total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver’s relationship to the patient were found.
Overall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted.
Electronic supplementary material
The online version of this article (doi:10.1186/1471-2407-14-541) contains supplementary material, which is available to authorized users.
PMCID: PMC4122762  PMID: 25069703
Cancer; Informal caregivers; Cross-sectional questionnaire study; Caregiving tasks; Caregiving consequences; Caregiver status; Caregiver’s relationship to the patient
13.  Daily burdens of recipients and family caregivers after lung transplant 
Lung transplant recipients are prescribed a complex medical regimen that is thought to be-burdensome and to interfere with daily activities of recipients and family caregivers. Yet empirical studies describing the activities that lung transplant recipients and their family caregivers perform on a typical day and the emotions associated with performing these activities are lacking.
To identify the daily activities and burdens after lung transplant.
The Day Reconstruction Method and content analysis were used to reconstruct a typical day for lung transplant recipients and their family caregivers.
The adult cardiothoracic transplant program of The University of Pittsburgh Medical Center.
Twenty-one dyads of lung transplant recipients and their family caregivers.
Main Outcome Measures
Variables of interest included lung transplant recipients’ and family caregivers’ daily activities and associated emotions, sociodemographics, clinical characteristics, and patient-reported outcomes of quality of life, symptoms of depression and anxiety, and functional performance.
Participants reported 286 daily activities and 138 associated positive and negative emotions. No activities or emotions were uniquely reported by lung transplant recipients or caregivers, providing evidence of the shared responsibility for caregiving and health maintenance. Most activities reported by caregivers and lung transplant recipients were health-related. Compared with lung transplant recipients, caregivers reported positive emotions more often, yet reported lower overall daily mood. This finding is consistent with results of previous studies indicating that specific caregiving tasks were typically rewarding for caregivers, but overall, care giving takes its toll.
Findings enhance our understanding of the burdens lung transplant recipients and caregivers face and point to the need for further support for dyads after lung transplant.
PMCID: PMC3331720  PMID: 22489442
14.  Is sertraline treatment or depression remission in depressed Alzheimer’s patients associated with improved caregiver wellbeing? The Depression in Alzheimer’s Disease Study 2 (DIADS-2) 
To assess if sertraline treatment (vs. placebo) or remission of depression at 12 weeks (vs. non-remission) in Alzheimer’s patients is associated with improved caregiver wellbeing.
A randomized, double-blind, placebo-controlled clinical trial of the efficacy and safety of sertraline for the treatment of depression in individuals with Alzheimer’s disease.
Five clinical research sites across the United States.
Caregivers of patients enrolled in the Depression in Alzheimer’s Disease Study 2 (N=131).
All caregivers received standardized psychosocial support throughout the study.
Caregiver outcome measures included depression (Beck Depression Inventory), distress (Neuropsychiatric Inventory), burden (Zarit Burden Interview), and quality of life (Medical Outcomes Study Short Form Health Survey).
Fifty-nine percent of caregivers were spouses, 63.4% were female, and 64.1% were white. Caregivers of patients in both treatment groups had significant reductions in distress scores over the 24 week study period, but there was not a greater benefit for caregivers of patients taking sertraline. However, caregivers of patients whose depression was in remission at week 12 had greater declines in distress scores over the 24 weeks than caregivers of patients whose depression did not remit by week 12.
Patient treatment with sertraline was not associated with significantly greater reductions in caregiver distress than placebo treatment. Distress but not level of depression or burden lessened for all caregivers regardless of remission status and even more so for those who cared for patients whose depression remitted. Results imply an interrelationship between caregiver distress and patient psychiatric outcomes.
PMCID: PMC3910508  PMID: 24314887
sertraline; depression; Alzheimer’s; caregivers; DIADS-2
15.  Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study 
BMC Psychiatry  2013;13:103.
Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver’s life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness.
A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews.
We identified an underlying psychological factor “perceived freedom of choice” which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver.
The concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers’ life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically at risk of becoming overloaded. Whether people perceive that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention needed to support caregivers.
PMCID: PMC3617010  PMID: 23537066
Older adults; Mental illness; Informal caregiver; Gain; Loss; Psychiatric nursing
16.  Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site,, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
To assess the effectiveness of behavioural interventions for the treatment and management of urinary incontinence (UI) in community-dwelling seniors.
Clinical Need: Target Population and Condition
Urinary incontinence defined as “the complaint of any involuntary leakage of urine” was identified as 1 of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home. Urinary incontinence is a health problem that affects a substantial proportion of Ontario’s community-dwelling seniors (and indirectly affects caregivers), impacting their health, functioning, well-being and quality of life. Based on Canadian studies, prevalence estimates range from 9% to 30% for senior men and nearly double from 19% to 55% for senior women. The direct and indirect costs associated with UI are substantial. It is estimated that the total annual costs in Canada are $1.5 billion (Cdn), and that each year a senior living at home will spend $1,000 to $1,500 on incontinence supplies.
Interventions to treat and manage UI can be classified into broad categories which include lifestyle modification, behavioural techniques, medications, devices (e.g., continence pessaries), surgical interventions and adjunctive measures (e.g., absorbent products).
The focus of this review is behavioural interventions, since they are commonly the first line of treatment considered in seniors given that they are the least invasive options with no reported side effects, do not limit future treatment options, and can be applied in combination with other therapies. In addition, many seniors would not be ideal candidates for other types of interventions involving more risk, such as surgical measures.
Note: It is recognized that the terms “senior” and “elderly” carry a range of meanings for different audiences; this report generally uses the former, but the terms are treated here as essentially interchangeable.
Description of Technology/Therapy
Behavioural interventions can be divided into 2 categories according to the target population: caregiver-dependent techniques and patient-directed techniques. Caregiver-dependent techniques (also known as toileting assistance) are targeted at medically complex, frail individuals living at home with the assistance of a caregiver, who tends to be a family member. These seniors may also have cognitive deficits and/or motor deficits. A health care professional trains the senior’s caregiver to deliver an intervention such as prompted voiding, habit retraining, or timed voiding. The health care professional who trains the caregiver is commonly a nurse or a nurse with advanced training in the management of UI, such as a nurse continence advisor (NCA) or a clinical nurse specialist (CNS).
The second category of behavioural interventions consists of patient-directed techniques targeted towards mobile, motivated seniors. Seniors in this population are cognitively able, free from any major physical deficits, and motivated to regain and/or improve their continence. A nurse or a nurse with advanced training in UI management, such as an NCA or CNS, delivers the patient-directed techniques. These are often provided as multicomponent interventions including a combination of bladder training techniques, pelvic floor muscle training (PFMT), education on bladder control strategies, and self-monitoring. Pelvic floor muscle training, defined as a program of repeated pelvic floor muscle contractions taught and supervised by a health care professional, may be employed as part of a multicomponent intervention or in isolation.
Education is a large component of both caregiver-dependent and patient-directed behavioural interventions, and patient and/or caregiver involvement as well as continued practice strongly affect the success of treatment. Incontinence products, which include a large variety of pads and devices for effective containment of urine, may be used in conjunction with behavioural techniques at any point in the patient’s management.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials that examined the effectiveness, safety, and cost-effectiveness of caregiver-dependent and patient-directed behavioural interventions for the treatment of UI in community-dwelling seniors (see Appendix 1).
Research Questions
Are caregiver-dependent behavioural interventions effective in improving UI in medically complex, frail community-dwelling seniors with/without cognitive deficits and/or motor deficits?
Are patient-directed behavioural interventions effective in improving UI in mobile, motivated community-dwelling seniors?
Are behavioural interventions delivered by NCAs or CNSs in a clinic setting effective in improving incontinence outcomes in community-dwelling seniors?
Assessment of Quality of Evidence
The quality of the evidence was assessed as high, moderate, low, or very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Executive Summary Table 1 summarizes the results of the analysis.
The available evidence was limited by considerable variation in study populations and in the type and severity of UI for studies examining both caregiver-directed and patient-directed interventions. The UI literature frequently is limited to reporting subjective outcome measures such as patient observations and symptoms. The primary outcome of interest, admission to a LTC home, was not reported in the UI literature. The number of eligible studies was low, and there were limited data on long-term follow-up.
Summary of Evidence on Behavioural Interventions for the Treatment of Urinary Incontinence in Community-Dwelling Seniors
Prompted voiding
Habit retraining
Timed voiding
Bladder training
PFMT (with or without biofeedback)
Bladder control strategies
CI refers to confidence interval; CNS, clinical nurse specialist; NCA, nurse continence advisor; PFMT, pelvic floor muscle training; RCT, randomized controlled trial; WMD, weighted mean difference; UI, urinary incontinence.
Economic Analysis
A budget impact analysis was conducted to forecast costs for caregiver-dependent and patient-directed multicomponent behavioural techniques delivered by NCAs, and PFMT alone delivered by physiotherapists. All costs are reported in 2008 Canadian dollars. Based on epidemiological data, published medical literature and clinical expert opinion, the annual cost of caregiver-dependent behavioural techniques was estimated to be $9.2 M, while the annual costs of patient-directed behavioural techniques delivered by either an NCA or physiotherapist were estimated to be $25.5 M and $36.1 M, respectively. Estimates will vary if the underlying assumptions are changed.
Currently, the province of Ontario absorbs the cost of NCAs (available through the 42 Community Care Access Centres across the province) in the home setting. The 2007 Incontinence Care in the Community Report estimated that the total cost being absorbed by the public system of providing continence care in the home is $19.5 M in Ontario. This cost estimate included resources such as personnel, communication with physicians, record keeping and product costs. Clinic costs were not included in this estimation because currently these come out of the global budget of the respective hospital and very few continence clinics actually exist in the province. The budget impact analysis factored in a cost for the clinic setting, assuming that the public system would absorb the cost with this new model of community care.
Considerations for Ontario Health System
An expert panel on aging in the community met on 3 occasions from January to May 2008, and in part, discussed treatment of UI in seniors in Ontario with a focus on caregiver-dependent and patient-directed behavioural interventions. In particular, the panel discussed how treatment for UI is made available to seniors in Ontario and who provides the service. Some of the major themes arising from the discussions included:
Services/interventions that currently exist in Ontario offering behavioural interventions to treat UI are not consistent. There is a lack of consistency in how seniors access services for treatment of UI, who manages patients and what treatment patients receive.
Help-seeking behaviours are important to consider when designing optimal service delivery methods.
There is considerable social stigma associated with UI and therefore there is a need for public education and an awareness campaign.
The cost of incontinent supplies and the availability of NCAs were highlighted.
There is moderate-quality evidence that the following interventions are effective in improving UI in mobile motivated seniors:
Multicomponent behavioural interventions including a combination of bladder training techniques, PFMT (with or without biofeedback), education on bladder control strategies and self-monitoring techniques.
Pelvic floor muscle training alone.
There is moderate quality evidence that when behavioural interventions are led by NCAs or CNSs in a clinic setting, they are effective in improving UI in seniors.
There is limited low-quality evidence that prompted voiding may be effective in medically complex, frail seniors with motivated caregivers.
There is insufficient evidence for the following interventions in medically complex, frail seniors with motivated caregivers:
habit retraining, and
timed voiding.
PMCID: PMC3377527  PMID: 23074508
17.  Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups 
Annals of internal medicine  2006;145(10):727-738.
Caring for a family member with dementia is extremely stressful, contributes to psychiatric and physical illness among caregivers, and increases the risk for caregiver death. Finding better ways to support family caregivers is a major public health challenge.
To test the effects of a structured multicomponent intervention on quality of life and clinical depression in caregivers and on rates of institutional placement of care recipients in 3 diverse racial or ethnic groups.
Randomized, controlled trial.
In-home caregivers in 5 U.S. cities.
212 Hispanic or Latino, 219 white or Caucasian, and 211 black or African-American caregivers and their care recipients with Alzheimer disease or related disorders.
Caregivers within each racial or ethnic group were randomly assigned to an intervention or to a control group. The intervention addressed caregiver depression, burden, self-care, and social support and care recipient problem behaviors through 12 in-home and telephone sessions over 6 months. Caregivers in the control group received 2 brief “check-in” telephone calls during the 6-month intervention.
The primary outcome was a quality-of-life indicator comprising measures of 6-month caregiver depression, burden, self-care, and social support and care recipient problem behaviors. Secondary outcomes were caregiver clinical depression and institutional placement of the care recipient at 6 months.
Hispanic or Latino and white or Caucasian caregivers in the intervention group experienced significantly greater improvement in quality of life than those in the control group (P < 0.001 and P = 0.037, respectively). Black or African-American spouse caregivers also improved significantly more (P = 0.003). Prevalence of clinical depression was lower among caregivers in the intervention group (12.6% vs. 22.7%; P = 0.001). There were no statistically significant differences in institutionalization at 6 months.
The study used only a single 6-month follow-up assessment, combined heterogeneous cultures and ethnicities into a single group, and excluded some ethnic groups.
A structured multicomponent intervention adapted to individual risk profiles can increase the quality of life of ethnically diverse dementia caregivers.
PMCID: PMC2585490  PMID: 17116917
18.  Family Caregiving and Emotional Strain: Associations with Quality of Life in a Large National Sample of Middle-Aged and Older Adults 
This study examined the quality of life correlates of family caregiving and caregiving strain in a large national epidemiological sample.
Structured telephone interviews were conducted with 43,099 participants as part of the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants completed the 12-item short form health survey (SF-12) and brief measures of depressive symptoms, social contacts, and caregiving strain.
Family caregiving responsibilities were reported by 12% of participants. Caregivers reported more quality of life problems than noncaregivers, but these effects were largely dependent on the perceived level of caregiving strain. High strain caregivers reported more problems with emotional distress, worse physical functioning, and fewer social contacts than noncaregivers. Conversely, caregivers who reported no strain from caregiving reported better quality of life than noncaregivers. Caregiving strain effects were not due to demographic differences or to more objective indicators of caregiving demand.
Psychological and social indices of quality of life indicate prevalent problems among family caregivers who experience high strain from their caregiving responsibilities. Public health programs for disabled individuals should include assessments of strain on family caregivers and support services for those who report high levels of caregiving strain.
PMCID: PMC2855243  PMID: 19421895
caregiving; caregiving strain; family caregivers; psychological health; depressive symptoms; health-related quality of life
19.  Elevated Peri-transplant Distress in Caregivers of Allogeneic Blood or Marrow Transplant Patients 
Psycho-oncology  2013;22(9):2064-2070.
A full-time 24/7 caregiver is required for 100 days or longer following an allogeneic blood or marrow transplant during which time caregivers have multiple demands. Although distress in caregivers is documented, generalization is limited by small sample sizes, restricted range of assessments, and lack of information as to which caregivers may be more vulnerable to distress. The purpose of this study was to describe the peri-transplant psychological status of a sample of caregivers of allogeneic transplant patients.
We assessed caregiver mood, stress, burden, and sleep using valid self-report measures in 109 caregivers of allogeneic transplant patients prior to stem cell transplantation. Caregivers’ scores were compared to norms or established cut-off scores for behavioral measures. Additionally, demographic characteristics such as age and sex were tested as predictors of distress.
Caregivers showed significant levels of anxiety, stress, intrusion and avoidance behaviors, and poor sleep at the start of transplant compared to established norms. Younger caregivers were more distressed than older caregivers. There were no differences in levels of distress between male and female caregivers.
The peri-transplant period is a time of heightened anxiety and distress for caregivers of allogeneic transplant patients. This study indicates that caregivers would benefit from support programs in the peri-transplant period. Recommendations for types of support that may be helpful to caregivers are provided but additional research is needed to validate that these programs would help caregivers providing care to patients receiving an allogeneic transplant in the peri-transplant period.
PMCID: PMC3696414  PMID: 23440998
Cancer; oncology; caregiver; allogeneic transplant; stress; distress
20.  Family Caregiver Social Problem-Solving Abilities and Adjustment to Caring for a Relative with Vision Loss 
To examine the prevalence of persons at risk for depression among family caregivers of visually impaired persons and the extent to which social problem-solving abilities are associated with caregiver depressive symptomatology and life satisfaction.
Family caregivers were defined as adults who accompanied their adult relative to an appointment at a low-vision rehabilitation clinic and self-identified themselves as the primary family caregiver responsible for providing some form of assistance for their relative due to vision impairment. Demographic variables, depressive symptoms, life satisfaction, caregiver burden, and social problem-solving abilities were assessed in caregivers. The patient’s visual acuity and depressive symptoms and their relationship to the caregiver’s depressive symptoms and life satisfaction were also examined.
Ninety-six family caregivers were enrolled. Of those, 35.4% were identified as at risk for depression. Among caregivers, dysfunctional or ineffective social problem-solving abilities were significantly associated with greater depressive symptomatology and decreased life satisfaction after adjustment for caregiver burden and demographic and medical variables for both the caregiver and the visually impaired patient. Problem orientation or motivation to solving problems was also significantly associated with caregiver depression and satisfaction with life.
A substantial number of caregivers of visually impaired adults experience psychosocial distress, particularly among those who possess poor social problem-solving abilities. These results underscore the need for routine screening and treatment of emotional distress among individuals caring for relatives with vision impairments. Future research should examine the extent to which psychosocial interventions targeting caregiver social problem-solving skills may be useful not only in improving caregiver quality of life but also in subsequently enhancing rehabilitation outcomes for the visually impaired care recipient.
PMCID: PMC2771396  PMID: 19060279
21.  Caregiver Burden and its Determinants among the Family Members of Patients with Dementia in Iran 
“Caregiver Burden” is actually an expression addressing the adverse consequences of the care provided to the patients’ with dementia. Review of the previous studies reveals a higher rate of depression and anxiety among the caregivers as compared to the general population. This study has been designed to evaluate the caregiver burden and then the factors influencing it among caregivers of patients with dementia in Iran.
In this cross-sectional study, 153 patients and their caregivers registered in the Memory Clinic in Roozbeh Hospital and Iranian Alzheimer Association (IAA) were included. Data collection scales were Iranian Version of Caregiver Burden, Global Deterioration scale and Barthel index. Multiple linear regression model was applied to determine the factors influencing the caregiver burden.
Out of the 153 patients, 90 were male. The mean age calculated for the patients and the caregivers was 77.1 and 53, respectively. The mean of caregiver burden was 55.2. Three variables, gender (P<0.01), education of the patient (P<0.005 for illiterate patients), and the patient's dependence on the caregiver for his/her daily tasks (P<0.000)) were correlated with a high level of burden on the caregiver. The recommended model explains 0.664% of the variance of the outcome variable.
Presence of either moderate or higher levels of burden (58-116) in more than 50% of the caregivers of these patients’ highlights the need for more attention from health policy makers in Iran. Promoting the level of caregivers’ quality of life along with enabling the patients in performing their daily tasks in order to reduce the imposed burden on caregivers’ is recommended.
PMCID: PMC3429801  PMID: 22973484
Dementia; caregivers; burden; family caregivers; elderly people; caregiver burden; Iran
22.  Does a Family Meetings Intervention Prevent Depression and Anxiety in Family Caregivers of Dementia Patients? A Randomized Trial 
PLoS ONE  2012;7(1):e30936.
Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients.
A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes), caregiver burden and quality of life (secondary outcomes). Intention-to-treat as well as per protocol analyses were performed.
A substantial number of caregivers (72/192) developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38) or in reducing depressive (randomization-by-time interaction coefficient = −1.40; 95% CI −3.91 to 1.10) or anxiety symptoms (randomization-by-time interaction coefficient = −0.55; 95% CI −1.59 to 0.49). The intervention did not reduce caregiver burden or their health related quality of life.
This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial if provided in a more concentrated dose, when applied for therapeutic purposes or targeted towards subgroups of caregivers.
Trial Registration ISRCTN90163486
PMCID: PMC3267736  PMID: 22303473
23.  Bereavement among Hospice Caregivers of Cancer Patients One Year following Loss: Predictors of Grief, Complicated Grief, and Symptoms of Depression 
Journal of Palliative Medicine  2013;16(7):745-751.
Informal caregivers are an integral part of end-of-life care for hospice patients with cancer. Although adjustment following loss is highly individual, many caregivers have significant psychological distress after the death of a loved one. This study investigated risk factors that may predict psychological distress, which could aid hospice bereavement departments in targeting bereavement services.
Demographic characteristics, patient impairment, caregiver baseline symptoms of depression, and caregiver resources were assessed among 188 cancer patient–caregiver dyads. Regression analyses identified predictors of symptoms of depression, grief, and complicated grief one year following loss.
Over 50% of bereaved caregivers had clinically significant depressive symptoms one year after death of their relative. Caregivers with fewer years of education and more baseline symptoms of depression had significantly worse grief, complicated grief, and depression. Younger patient age was a significant predictor of poorer outcomes for grief and complicated grief; and less patient impairment was a significant predictor of more post-loss symptoms of depression. Lower social support satisfaction was correlated with worse grief and complicated grief but was not a significant multivariate predictor of poorer outcomes.
Despite having access to hospice bereavement services, many former caregivers had high psychological distress one year following loss. Bereavement departments could consider utilizing readily available risk factors to target services to former caregivers who may benefit from bereavement services. Bereavement departments might also consider including brief, standardized screenings of caregiver depression in initial risk assessments. Future studies should investigate evidence-based approaches for assessment and interventions among highly distressed former hospice caregivers.
PMCID: PMC3684105  PMID: 23697816
24.  Burden and Depression Among Caregivers of Patients with Cancer at the End-of-life 
Oncology nursing forum  2004;31(6):1105-1117.
The purpose of the study was to examine the patient and family caregiver variables that predicted caregiver burden and depression for family caregivers of patients with cancer at the end-of-life.
A prospective, longitudinal study was implemented with an inception cohort of patients and their family caregivers who were followed after the diagnosis and treatment of cancer. Data were analyzed using quantitative methods to determine the effect of caregiver age, sex, education, relationship to the patient, employment status, reports of patients’ symptoms, patient cancer type, stage of cancer, and time from the patient’s diagnosis to death on caregiver burden and depression at the patient’s end-of-life. This report examines the experiences of family caregivers whose patients died during the study.
Patients and caregivers were accrued from community oncology sites in the Midwestern United States.
152 family caregivers of patients with cancer who died during the course of the study.
Telephone interviews with patients were conducted at 6–8 weeks, 12–16 weeks, 24–30 weeks, and 52 weeks following patients’ diagnoses. In addition, patient medical records and state death certificates were reviewed.
Caregivers aged 45–54 reported the highest levels of depressive symptoms; caregivers aged 35–44 reported the strongest sense of abandonment. Caregivers who were the adult children of patients with cancer and who were employed reported high levels of depressive symptoms. Feeling abandoned (a portion of caregiver burden) was more prevalent in female, non-spouse, and adult children caregivers, and adult children caregivers of patients with early stage cancer and patients with multiple symptoms reported a high perception of disruption in their schedule due to providing care. Caregivers whose patients died early following diagnosis (between waves I and II) reported the highest depressive symptoms, burden, and impact on schedule.
Very little research exists that prospectively analyzes family caregiver experiences of burden and depression when providing end-of-life cancer care for a family member. Interventions aimed at decreasing caregiver depressive symptoms should be targeted at caregivers who are middle aged, adult children, and those who are employed. Interventions aimed at decreasing the burden associated with feeling abandoned and having schedules disrupted due to providing care should be targeted at caregivers who are female, non-spouse and adult children, and caregivers of patients with early stage cancer and multiple symptoms.
PMCID: PMC1315286  PMID: 15547633
25.  Psychosocial aspects of children and families of children treated with automated peritoneal dialysis 
Pediatric Nephrology (Berlin, Germany)  2013;28(11):2157-2167.
The aim of this study was to analyze psychosocial aspects of chronic kidney disease (CKD) in children treated with automated peritoneal dialysis (APD).
The study assessed 41 children > 2  (range 2.1–18) years of age and their parents. Data concerning the illness and sociodemographic parameters were collected. Patients completed the Paediatric Quality of Life Inventory (PedsQL) and their parents the PedsQL-proxy version, General Health Questionnaire (GHQ-12), Berlin Social Support Scales (BSSS), and Caregiver’s Burden Scale (CBS).
Parents rated their children’s overall health-related quality of life (QoL) as well as their physical and emotional functioning lower than the patients themselves. The majority of primary caregivers had a medium level of the total burden index in the CBS and higher values in the scales need for support and perceived available support than in the received support (BSSS). In the GHQ-12, 51.2 % of primary caregivers had scores >2 points, which indicated the possible occurrence of abnormal mental functioning.
Financial support for patients’ families is necessary. Parents who provide primary care to children on PD require, above all, emotional support and assistance in self-fulfilment. More than half of them may have impaired mental function. There is the strong need to provide continuous psychological care for caregivers. Differences in perception of the children’s activity in varied areas by the patients themselves and their caregivers may contribute to further problems within families.
PMCID: PMC3824203  PMID: 23949628
Children; Peritoneal dialysis; Health-related quality of life; Parents’ perceived burdens; Primary caregivers

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