Living with a partner with dementia: a systematic review and thematic synthesis of spouses’ lived experiences of changes in their everyday lives | Aging & Mental Health | Feb 2018
Objectives: Dementia causes dramatic changes in everyday-living for spouses. Occured changes in marital relationship, force spouses to perform more both mentally and physically. Leading to a spousal perceived burden. To improve understanding of spouses’ needs, spouses lived experiences is needed. The aim was to identify and synthesise qualitative studies on spouses’ lived experiences of living with a partner with dementia.
Methods: A systematic search was undertaken in January 2017. Six databases (CINAHL, Cochrane Library, Embase, PubMed, PsycINFO and Sociological Abstracts) were searched, using search terms in accordance with PICo. A descriptive synthesis and a thematic synthesis were undertaken.
Findings: Fifteen studies met the inclusion criteria. Three themes derived from the analysis 1) Noticing changes in everyday life 2) Transformation to a new marital relation in everyday life, with corresponding sub-themes; changes in marital relationship, management of the transitioned marital relation in everyday life 3) Planning the future.
Conclusion: Findings provide an overview of how spouses notice changes and transform their marital relationships in everyday-life. Findings offer a deeper understanding of changes that occurs over time while the partner is living at home. Findings contribute with knowledge on spouses’ experiences of changes in early-stages of dementia. Interventions supporting spouses are needed.
Involving family members and friends who serve as ‘informal carers’ for people with dementia could offer improved insights for healthcare professionals, and help alleviate feelings of stress, guilt and isolation felt by many who fulfill these duties | Dementia | via ScienceDaily
There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation.
The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals’ views and current practice regarding people with dementia and their interactions with informal caregivers.
We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework.
We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers’ model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers’ needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool.
Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient.
Objective: Few studies have utilised observation to investigate retained awareness when individuals with severe dementia interact with family members. Seeking evidence of retained awareness in those with severe dementia, interactive family visits in care homes were observed and analysed.
Method: Five family groups (14 individuals) completed 10/15-minute video recorded family interactions. Speech and non-speech interactions were analysed using Thematic Analysis.
Results: One superordinate theme: Distinctive family bonds; overarched two subthemes, in-step and out-of-step describing positive and negative familial interactions. In-step interactions revealed family groups reciprocating social support, having fun together, and willing to go on the ride together. Out-of-step interactions characterised social frustration, non-reciprocity, and sidelining of members with dementia. Although awareness fluctuated, complex awareness was observed in the speech/non-speech expressions of those with dementia. In response, visitors appeared to treat those expressions and behaviours as understandable. Observed outcomes were out-of-step when visitors sought to retain the familiar and in-step when visitors sought to optimise all communication possibilities.
Conclusion: Video recorded family interactions and analysis revealed: (a) awareness was retained in the participants with severe dementia beyond assessed levels; and (b) Relational Social Engagement (RSE) occurred within family groups despite positive or negative interactions. Implications are discussed.
The purpose of this meta-synthesis was to present an in-depth analysis of existing qualitative literature concerning experiences and needs of the relatives of patients with dementia in hospitals | Journal of Clinical Nursing
Background: Relatives are an important resource for the care of patients with dementia in hospitals. They provide necessary information about the patient and can support the patient’s care. Simultaneously, they are themselves vulnerable, having specific needs and experiences. A number of studies have been conducted that focus on the perspectives of the relatives. The synthesis of qualitative studies contributes to a more comprehensive understanding of recent study findings.
Results: Relatives of patients with dementia frequently experience a negative cycle of specific worries, negative feelings and resulting roles and functions in hospital due to negative care experiences.
Conclusions: Experiences of relatives are strongly influenced by the attitudes, expertise and communication that they receive from health professionals working in the hospital. The results clearly show how health professionals have the potential to break through the negative cycle and contribute to a more positive feeling about a patient’s hospital stay.
Relevance to clinical practice: Structured and individually planned involvement of the relatives during the hospital care seems to be a key aspect for improving the experiences for the relatives and the patients with dementia. Collaboration with the relatives needs to be valued and supported by the organisation. Also a professional and defined frame for this area of responsibility needs to be provided.
Objectives: Caring for a patient with dementia is a real challenge and can have considerable psychological consequences in the long run. Many caregivers, mostly relatives, feel highly burdened. To develop effective caregiver support to prevent caregivers from getting overburdened, insight is needed into the determinants of burden. The objective of this study is to explore which patient and caregiver characteristics determine the different kinds of caregiver burden over time, both in the short and in the long run.
Method: The study was longitudinal. Data on patients and caregivers, general burden and emotional distress were collected at three times: at baseline, at the end of treatment and at nine months. The study was conducted in a psychiatric skilled nursing home with a unit for integrative reactivation and rehabilitation (IRR) and at different sites of home-/day care, assisted living arrangements and nursing home wards (usual care).
Results: General burden is shown to be determined by severity of patient’s neuropsychiatric symptoms, caregiver’s sense of competence, health-related quality of life. Emotional distress is determined by severity of patient’s neuropsychiatric symptoms, caregiver’s sense of competence, high affiliation and patient gender.
Conclusion: In preventing or treating caregiver burden, professional interventions need to aim specifically at diminishing the neuropsychiatric symptoms in dementia patients and improving the sense of competence in caregivers.
The qualitative research on young onset dementia is providing insights about the ‘lived experience’ of patients and caregivers. However, findings from these studies have seldom been integrated into descriptive overviews. Our aim was to search the qualitative research, to integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers.
The search of the qualitative research formed part of a broader comprehensive literature search investigating salient measurement issues in the young onset dementia psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) plus supplementary searching of reference sections and use of online search engines. We identified 23 qualitative articles.
In the pre-diagnostic period, patients experience changes in cognition and functioning but may be uncertain about changes and their significance. Caregivers may observe changes, think of explanations, and are important in instigating medical intervention. Obtaining a diagnosis may be a demanding process and the possibility of dementia may not be anticipated. In the post-diagnostic period, patients and caregivers use several strategies to cope and adjust. Patients can withdraw from established responsibilities while caregivers assume compensatory roles/duties. Patients perceive changes in their identity while caregivers perceive changes in the caregiver–patient relationship. Both can experience grief, isolation, and stigma.
The diagnosis of dementia elicits significant changes in thinking, emotion, and lifestyle that patients and caregivers are unlikely to be ready for. Both receive insufficient support or guidance in particular of a psychological nature on how to cope and adjust.
This paper examines how the relatives of a person with dementia experience challenges in everyday life. A model of phases is developed on the basis of interviews with 14 relatives from eight families. Data were subjected to a thematic content analysis, which found that the progression of dementia – from the perspective of the family – had three phases.
These phases involved small changes in everyday life, adaptations to everyday life, and the loss of everyday life. The analysis further identified the following two archetypes of relatives that develop throughout the progression of dementia: the protective relative and the decisive relative.
The study found that the two types of relatives experience different challenges during the three phases. It is important for health professionals to be familiar with these changes, when they evaluate whether the relatives of a person with dementia require help.
Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge.
By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions.
Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires – the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM).
Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764).
Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse’s emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.
The following report, put together by the British Psychological Society Dementia Advisory Group, presents a psychological perspective on the nature and experience of dementia
As well as outlining the roles and contributions of psychologists in the field of dementia care (particularly in supporting a move towards addressing dementia not only in terms of the underlying disease but also in considering the practical dimensions of social and cognitive disability associated with it), this report presents recommendations for action in the following areas:
Planning of care
Treatment and support
Dealing efectively and appropriately with families and carers
Training and research
These recommendations were produced in consultation with people experiencing dementia, their families, and their carers, in order to present a truly person-centred approach to dementia treatment and management in the UK.