Background

Dementia refers to a group of disorders characterized by progressive deterioration of thinking ability and memory as the brain becomes damaged.1 Dementias are categorized as reversible when secondary to a primary illness, such as thyroid disease or kidney disease.1 Irreversible dementias include Alzheimer's disease, vascular dementia, frontotemporal dementia, Lewy body dementia and Creutzfeldt-Jakob disease.1 Symptoms of dementia include loss of short- and long-term memory and changes in mood, thinking, behavior and the ability to communicate.1,2 These symptoms will eventually affect every aspect of a person's life, including work, relationships and the activities of daily living.1

Accounting for 60% to 80% of all dementias, Alzheimer's disease is a degenerative and fatal brain disease in which cells in the hippocampus area of the brain are unable to communicate with each other,3 and eventually, brain cells become damaged and die.2 Many of the risk factors for Alzheimer's disease, such as high cholesterol levels, high blood pressure and diabetes, are also risk factors for other diseases, especially cardiac diseases.1 In fact, 30% of Alzheimer's patients also have heart disease, and 29% have diabetes.3 Other risk factors include genetics and aging.3 Although there are drug therapies to reduce symptoms, there is no cure or medical treatments currently on the market to reverse or arrest the advance of Alzheimer's disease or other dementias.1

As of 2015, over 46 million people live with dementia worldwide. A total of 9.4 million people in the Americas, 10.5 in Europe, 4.0 in Africa and 22.9 million people in Asia have dementia.3 These numbers are estimated to increase to 131.5 million by 2050.3 The increase will primarily occur in low- and middle-income countries.3 Every three seconds, someone is diagnosed with dementia.3 The worldwide costs related to dementia are enormous and estimated to be around $605 billion.2 Although dementia shortens the lives of those affected, its greatest impact is upon quality of life, both for individuals living with dementia, and their family and caregivers.3 The human and economic costs of dementia in the future have the potential to be staggering.

An initial review of the research in the JBI Database of Systematic Reviews and Implementation Reports, CINAHL and PROSPERO indicates that appropriate care and treatment for people with dementia can vary greatly and are dependent on the stage of the disease, as well as how it affects each individual at any given point in time. Education and the development of stage-specific coping skills, both for the person with dementia and their caregivers, are important aspects of effective care plans.

The majority of care for people with dementia is provided by unpaid caregivers.4 It can be devastating for family members to watch a loved one progress through the disease. Caring for a loved one with dementia can be overwhelming for unpaid caregivers, and adequate support from the health, social, financial and legal systems is required for them.5 Dementia usually implies not only a long period of profound disability and suffering for the person with dementia, but also a severe strain and financial burden on the person's family who often become caregivers.2

Internationally, there is an emphasis on aging in place and care being provided in the home. In most countries, the predominant and first form of care is provided by family members.6 Care systems range from the Nordic system of extensive welfare benefits and services, to liberal governments in which social welfare focuses primarily on low-income people, and most people are expected to purchase services on the market.6 In countries with a familial culture such as Taiwan and Japan, where public services and social security are just beginning to expand, it is predicted that unpaid caregivers may not be as available as they are today, leading some countries to provide a care allowance to caregivers, or attendance allowances to the person in need of care.6 Consequently, many governments around the world are beginning to acknowledge the work of unpaid, informal caregivers and to provide funding for this service.6

The majority of the literature defines unpaid caregiver experience under the term "caregiver burden" or strain.7 "Caregiver burden" is used to describe physical, psychological, emotional, social and financial stressors associated with the experience of caring for a person with dementia.8 Caregiver burden is different from caregiving, which denotes the activities and experiences involved in providing assistance to relatives who are not able to provide for themselves, and it does not include the psychological distress that may arise from it.8-10 The shift from being a partner to being a caregiver (i.e. horizontal to vertical relationship) can be experienced as a crisis, but there can also be acceptance of, adaptation acceptance and adjustment to the situation.11

Although there can be positive aspects of the unpaid caregiver role, caregiver burden is associated with poor outcomes for unpaid caregivers such as depression, illness and decreased quality of life, consequently contributing to poor outcomes for dementia patients such as poor quality of life and early nursing home placement.8 More than 80% of unpaid caregivers report high levels of stress, and almost half report that they suffer from depression.8

There are significant associations between unpaid caregiver burden and the extent of dementia-related symptoms in the person being cared for. The factors that contribute the most to unpaid caregiver burden are: (i) neuropsychiatric symptoms, (ii) difficulties with activities of daily living, (iii) time devoted to caregiving, (iv) caregiver's age and patient's gender, and (v) severity of cognitive impairment of the person with dementia.12 Both behavioral disturbance and cognitive impairment of the person being cared for are strong determinants of unpaid caregiver burden.12 The stage of dementia, functional deficits and behavioral disturbances are important factors when evaluating the relationship between patients' symptoms and unpaid caregivers' wellbeing.13 As the disease progresses, unpaid caregiver burden increases. Behavioral and psychological challenges such as aggression, agitation, wandering and communication problems are particularly difficult for unpaid caregivers.8-10,14 In Torti et al.'s15 multinational literature review, significant measurable problems that impact unpaid caregivers' lives were documented in a third to half of all caregivers in almost every study. The consistency of the results across cultures "speaks to universal emotions when confronted with personal crisis"15^(p.107) like dementia.

Unpaid caregivers can adapt to the caregiving role15; however, unpaid caregiving can also be a solitary experience leaving the caregiver with lingering doubts, grief and anxiety, even after the family member has passed away.4 Unpaid caregivers also experience "biographical disruption", a sense of strangeness and incoherence about their own life.4 Many unpaid caregivers do not distinguish between the disease and disability; for them, the inability of the person with a dementia to drive or no longer recognize a spouse "were not just symptoms of the disease, they were the disease".4^(p.15)

Unpaid caregivers often need additional professional advice about what to do when their relative is frightened, angry or confused.16 Although there is a need to reduce unpaid caregiver burden and to improve quality of life for both caregivers and family members with dementia, programs are not always available and/or effective, even in highly developed countries such as the United States, United Kingdom and Australia.17 A multinational review of dementia-caregiver burden reduction interventions found that these programs have been largely unsuccessful.15 Findings were consistent across studies, countries and healthcare systems.15 Several studies have found that information, including self-help materials, referrals to support groups and case management, have also been unsuccessful.16,18-20

Alternatively, interventions that are psychoeducational and/or have a multicomponent design can be effective in reducing caregiver burden.18 In a Canadian psychoeducational intervention study, unpaid caregivers reported feeling more confident in dealing with their caregiving situations, better prepared to provide care, better able to plan future care, more knowledgeable about available services, more efficacious in their caregiver role and able to make more frequent use of the coping strategies of problem solving and reframing.21 Intervention at the onset of care is key to improving unpaid caregiver adaptation to the new challenges they must meet.21 Unpaid caregiver assessment and intervention need to be tailored to individual circumstances and contexts in which caregiver burden occurs, and healthcare professionals have a responsibility to recognize caregiver burden.22

A preliminary search was conducted in CINAHL and PubMed for systematic reviews on experiences of unpaid caregivers and six reviews were identified. Ablitt et al.'s systematic review focused on examining relationships between the person with dementia and family members and not on the overall experiences and perceptions of caregivers.23 Chan24 conducted a literature review, not a systematic review, and the experiences and perceptions of unpaid caregivers was not the focus but rather the perspectives of Asian populations across the world. Innes et al.25 focused on rural and remote settings, and the review included all research designs. Large and Slinger's26 study was a meta-ethnography on caregiver grief, focusing on one aspect of the unpaid caregiver experience. Lastly, McCabe et al.27 focused on self-perceived caregiver needs, not experiences. Although Quinn et al.14 conducted a systematic review on the topic of caregivers of people with dementia, only quantitative studies were included; thus, the review did not capture the experiences and perceptions of unpaid caregivers of people with dementia. The review proposed here is different from those completed because it is focused on the experiences and perceptions of the individuals providing care to a community-dwelling person with a dementia, therefore taking a broader view than reviews to date. Examining first-hand accounts of unpaid caregivers is expected to reveal what they identify as important to them for care delivery. This knowledge will add to the evidence base needed for care planning and delivery.

A systematic review of the qualitative research exploring the experiences of unpaid caregivers of community-dwelling people with dementia will provide knowledge that can be used to build interventions that support unpaid caregivers, strengthen health and social systems and lead to new models of support for unpaid caregivers. Just as importantly, such a review will identify gaps in what is known about the experiences of caregivers who provide care to people with a dementia and where further research is needed.

Inclusion criteria

Types of participants

This review will include studies on unpaid caregivers providing home-based care to people with a dementia. "Unpaid" encompasses family members as well as friend caregivers. This review will consider qualitative studies with a focus on family members' and friends' experiences with caring for adults with dementia.

Phenomenon of interest

The phenomenon of interest in this qualitative review is the experiences and perceptions of unpaid caregivers providing care for community-dwelling adults with dementia.

Context

The review will consider qualitative research on community-dwelling adults with dementia living with a family member or friend caregiver. "Community-dwelling" means living independently in a private home or apartment. Community-dwelling clients living alone with dementia will also be considered.

Types of studies

The current review will consider qualitative studies that explore experiences and perceptions of family members and/or friends providing unpaid care for adults with dementia. The focus will be on qualitative designs and data including, but not limited to, phenomenology, grounded theory, ethnography, action research, critical and feminist research.

Search strategy

The search strategy aims to find both published and unpublished studies in English and French language from the inception of these databases to present. A three-step search strategy will be utilized in this review. We will undertake an initial limited search of PubMed, CINAHL and PsycINFO and identify a comprehensive list of key words from the text words contained in the title and abstract, and the index terms used to describe the article. Then we will conduct a second search using all identified keywords and index terms across each included database. Third, the reference list of all identified reports and articles will be searched for additional studies. Lower date limits will not be applied as we want to capture all existing qualitative studies related to the experiences and perceptions of unpaid caregivers of adults diagnosed with dementia. The upper date limit will be applied once final searches are complete. Databases are appropriate to the review topic with no duplication. The websites of the organizations listed will be included in the search.

The databases to be searched include CINAHL, PubMed, PsycInfo, SocINDEX, Biomed Central, Centre of Reviews and Dissemination (CRD), Dissertation Abstracts International, Embase, ISI Web of Science.

The search for unpublished studies will include Agency for Healthcare Research and Quality (AHRQ), Alzheimer's Association: Alzheimer's Disease and Dementia (US), Alzheimer Society of Canada. Alzheimer's Society (UK), American Nurses Association (ANA), Canadian Nurses Association, Centres for Health Evidence, Conference Proceedings, Digital Dissertations, DiVA [dissertations and other publications in full text from Nordic Universities], EPPI-Centre, Google Scholar, GrayLIT Network, Grey Literature Bulletin (North West Health Library and Information Services, Liverpool, UK), Grey Literature Report [via New York Academy of Medicine website], Grey Source: A Selection of Web-based Resources in Grey Literature, Index to Theses, Institute for Health and Social Care Research (IHSCR), National Information Center on Health Services Research and Health Care Technology (NICHSR), National Library of Medicine, Netting the Evidence, Networked Digital Library of Theses and Dissertations (NDLTD), New York Academy of Medicine Grey Literature Report, NLM Gateway, Policy Hub [http://www.policyhub.gov.uk/about/], Primary Care Clinical Practice Guidelines, ProQuest Dissertations and Theses Databases, PsycExtra, Public Health Agency of Canada, SIGLE (System for Information on Grey Literature in Europe), TRIP (Turning Research into Practice).

Initial keywords to be used will be: dementia, Alzheimer's, caregivers, family members, experience, unpaid/family caregivers, informal caregivers, carers, family, friend, son, daughter.

Assessment of methodological quality

Papers selected for retrieval will be assessed by two independent reviewers for methodological quality prior to inclusion in the review using standardized critical appraisal instruments from the JBI Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer. Authors of primary studies will be contacted for questions on missing information or if clarification is needed.

Data extraction

Data will be extracted independently by two independent reviewers from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomenon of interest, populations, study methods and outcomes of significance to the review question and specific objectives. The findings extracted will include themes, patterns, theories and concepts as reported in the studies along with all associated illustrations

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories will then be subjected to a meta-synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.

Acknowledgements

The authors would like to express their gratitude to the School of Nursing and Aligning Health Needs and Evidence for Transformative Change: a Joanna Briggs Institute Affiliated Group at Dalhousie University.

Appendix I: Appraisal instruments

QARI appraisal instrument

Appendix II

QARI data extraction instrument

References