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A growing body of literature suggests that the social context of experiencing dementia at a younger age may influence carers' and particularly partners' subjective experience and coping strategies. The current paper aims to explore the coping strategies adopted by six carers in order to adapt to changes in their relationship with their partner with...
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Objectives:
There is a paucity of research surrounding disclosure from the perspective of caring partners, therefore this research explores how caring partners understand and make sense of diagnostic information.
Method:
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Citations
... Les conjoints-aidants expérimentent de nombreuses difficultés tout au long du parcours d'aidance, tels la longue attente d'un diagnostic, la gestion des symptômes comportementaux et psychologiques, l'accroissement de difficultés financières et domestiques, la perte d'intimité ainsi que le manque de ressources (Chirico et al., 2021;Dourado et al., 2018;Grunberg et al., 2022). Lockeridge et Simpson (2013) révèlent que les conjoints-aidants de leur étude ont principalement adopté des stratégies d'adaptation fondées sur les émotions comme l'évitement ou le déni, ce qui peut, entre autres conséquences, entraîner des difficultés d'adaptation chez le conjoint-aidant ainsi que des conflits dans la relation aidant-aidé. Dourado et al. (2018) relèvent ces mêmes difficultés et craignent les impacts négatifs de la maladie sur le bien-être physique, psychologique, émotionnel et financier des conjoints-aidants. ...
... Dourado et al. (2018) relèvent ces mêmes difficultés et craignent les impacts négatifs de la maladie sur le bien-être physique, psychologique, émotionnel et financier des conjoints-aidants. Au su de ces difficultés, ces écrits pointent le développement d'évaluations spécifiques des besoins des conjoints-aidants, suivies d'interventions innovantes afin de faciliter les transitions et d'offrir des services communautaires et spécialisés adaptés à leurs besoins (Ducharme et al., 2013;Flynn et Mulcahy, 2013;Lockeridge et Simpson). ...
... Par ailleurs, ces auteurs avaient conclu qu'il s'agissait d'une stratégie d'adaptation développée au cours de la maladie, alors que nos participants les mentionnent comme des conditions personnelles antérieures à la maladie. Quant à la relation de couple, les participants l'ont qualifiée de stable et paisible D'autres conditions se révèlent inhibitrices des transitions; les participants éprouvent de la difficulté à parler de la maladie avec le proche, avec les enfants ou avec leur entourage, confirmant Lockeridge et Simpson (2013) et Wawrziczny et al. (2016), lesquels soulignent qu'il est difficile, voire souffrant, de parler de la maladie. Nos résultats mettent en lumière que le manque d'accompagnement des professionnels de la santé est un inhibiteur de la réussite des transitions. ...
p>Introduction: People living with early-onset dementia (EOD) experience many difficulties in their work, personal, family and spousal lives, and it often takes many years to obtain the diagnosis. During this waiting period, few appropriate services are available. Studies have described the changes that this situation causes for spousal-caregivers, but few studies have focused on the transitions that occur on their journey.
Objective: To explore the perceptions of spousal-caregivers of persons living with EOD diagnosed for more than 2 years, the conditions that impact their transition success, and their response patterns.
Method: Based on Meleis et al.'s (2000) theory of transitions, this pilot study used semi-structured interviews conducted with 3 spousal-caregivers. The verbatim of the transcribed interviews were analyzed using the method proposed by Paillé and Mucchielli (2021).
Results: The themes that emerged from the analysis are: 1) a long caregiving journey with multiple transitions; 2) personal and community conditions that influence the success of multiple transitions and 3) a variety of strategies for coping with the spousal caregiving role.
Discussion and conclusion: The results of this pilot study provide a better understanding of the realities of some spousal-caregivers. They can inspire subsequent studies by using a larger sample size and integrating, for example, mixed methods, to delve deeper into the lived experience of these caregivers. They can also offer some avenues for healthcare professionals in assessing their needs and suggest the importance of developing interventions and services to facilitate their various transitions.</p
... The common consequences of a YOD diagnosis include financial strains due to unemployment or early retirement (Roach & Drummond, 2014;Ryan et al 2021). Social relations also may decrease due to the changes in the person's social network as well as due to other people's attitude towards dementia and lack of knowledge (Lockeridge & Simpson, 2013). The persons with YOD may encounter different types of stigma which increases their emotional burden, isolation and future concerns (Werner et al., 2020). ...
... Family members may find it difficult to redefine goals when considering the YOD situation and SOC, and this may be due to many changing factors in the life situation of the person with YOD, the unknown progression of their illness and their broken future dreams (Millenaar et al., 2018). In the new situation, optimisation may be the solution to the problem by identifying the needs of the person with YOD and offering help in matters such as using technology or by emotionally responding (Lockeridge & Simpson, 2013). Compensation in YOD families can be focused on opportunities, positive matters and adjusting expectations to a new situation. ...
Objective: This narrative study explores how family members readjust to young onset dementia (YOD) being a part of their everyday life during the first four years of their family member’s illness. Background: Young onset dementia affects family relationships and challenges their life situation from the onset of the illness. It is therefore important to recognise and understand the family members’ supportive and resisting issues as well as their coping styles. Method: The data was collected in Finland by conducting interviews with 16 family members of people with YOD and these were repeated once a year for four years (2019 to 2022). The actant model was used to carry out the analysis. Results: Narrating the situation helps family members reconstruct their own story of their changed situation. Family members adjust their life situation at the beginning of the YOD diagnosis by retaining their daily continuity, coping, and by finding meanings. These require a recognition and an acceptance of the changes that YOD creates in relationships and daily living and may lead to a storyline that is broken, adaptive or alternative. Conclusion: When family members engage in storytelling, this can result in an increased awareness of their situation and lead them to identify opportunities and problems and solve them. This also leads to their readjustment to dementia as a part of their own personal narrative.
... For their part, children report a reversal of family roles, the spouses experience a redefinition of the marital relationship and the family readjustment becomes more noticeable (Harris and Keady, 2004;Flynn and Mulcahy, 2013;Roach et al, 2016;Wawrziczny et al, 2017). In addition, comparative studies have reported higher levels of burden and a greater impact on the quality of life of caregivers of people with early-onset dementia (van Vliet et al, 2010;Lockeridge and Simpson, 2013;Wang et al, 2020). ...
There is an urgent need to deepen understanding of the particular experience of family caregivers of people with early-onset familial Alzheimer’s disease. In this effort, we aim to identify the socio-demographic variables associated with social support, self-efficacy and coping strategies. Not belonging to the family lineage carrying the disease-causing mutation, having secondary or professional education, and caring for a relative in the early stages of dementia are associated with better coping tools. However, belonging to the family lineage carrying the mutation increases the use of passive coping, escape or emotional discharge, which risks adverse psychological outcomes.
... Frontiers in Psychology 07 frontiersin.org conditions and social life (Lockeridge and Simpson, 2013;Wawrziczny et al., 2016). While PWDs may question the necessity of all tasks and responsibilities taken over and away from them, ICs may question to what extent PWDs are able to successfully complete tasks and, as well, to provide emotion-or problem-oriented support as a romantic partner at eye level. ...
Objectives
Due to an aging population, the number of persons living with dementia (PWDs) is increasing worldwide. Romantic partners, as informal caregivers (IC) of PWDs, are often adopting additional tasks. The concept of dyadic coping (DC) addresses how couples cope with stress together. For dyadic coping to be successful, efforts of both partners should be equal. The current study examines how discrepancies in PWDs and ICs perspectives on DC relate to distress and quality of life in each partner within couples facing early stage dementia (ESD).
Methods
A total of 37 mixed-sex couples including one partner with ESD completed self-report questionnaires. Discrepancies in reciprocity (comparing provided or received levels of DC between partners), equity (each partner balancing own levels received and provided), and congruence (the agreement about levels of DC exchanged between partners) and their covariation with distress and quality of life (QoL) of each partner were measured.
Results
Both partners indicated a discrepancy in reciprocity: PWDs reported receiving more DC than ICs reported receiving, which was associated with higher QoL in PWDs and lower QoL in ICs. Inequities were found in ICs only, who reported receiving less DC, than providing. No relation between inequities and distress or QoL was found. ICs reported more incongruencies than PWDs did, which was associated with higher QoL and less depression in partners.
Discussion
A redivision of tasks and roles in the early stage of dementia is associated with different experiences and views between partners. Whereas ICs take over most household and care tasks within the couple, their effort was considered less helpful by PWDs than by ICs. A high care burden is associated with a compromised quality of ICs’ social life and living conditions. The clinical implications of the results are discussed.
... 6,10,11 They may be unsure of the appropriate management behaviour and face a dilemma as to whether they should promote the PwDs in terms of sense of initiative and autonomy, thus encouraging their contribution and enhancing their self-esteem, or resort to directive behaviours, supervise things, use compensatory strategies and take charge of daily tasks. 6,[12][13][14] Caregivers' management behaviours have implications for both caregivers and PwDs, and their relationships. Directive and control behaviours are associated with greater levels of anxiety, burden and guilt in caregivers, as well as a sense of monitoring, devaluation, infantilisation and uselessness in daily decisions in PwDs. ...
... Directive and control behaviours are associated with greater levels of anxiety, burden and guilt in caregivers, as well as a sense of monitoring, devaluation, infantilisation and uselessness in daily decisions in PwDs. 6,12 Furthermore, these behaviours lead caregivers to be constantly present for supervision or assistance. Although this forced closeness may sometimes be experienced as an asset to strengthen the relationship, it is most often considered as a hindrance to their mutual activities and social networks, resulting in loneliness and burden. ...
Background:
Persons with dementia gradually disengage from daily activities, and therefore require increasing daily support. Caregivers face a dilemma as to whether they should encourage the persons with dementia in terms of initiative and autonomy, or supervise and take charge of tasks, which may cause distress for both parties. This study seeks to better understand how caregivers manage the disengagement of the persons with dementia and the repercussions on their caregiving experience.
Methods:
A total of 217 caregivers participated. Their management behaviours and the characteristics of their caregiving experiences were assessed with questionnaires. A cluster analysis was first performed to identify possible profiles of management behaviours and comparison, which were then compared to identify the caregiving experience associated with each profile.
Results:
The first cluster (25.8% of the sample) corresponds to caregivers with high negative control behaviour scores and high positive stimulation behaviour scores; the second cluster (43.8% of the sample) corresponds to caregivers with low positive stimulation behaviour scores and high negative control behaviour scores; and the third cluster (30.4% of the sample) corresponds to caregivers with low negative control behaviour scores and high positive stimulation behaviour scores. Caregivers in Clusters 2 and 3 differ in terms of anxiety, depression, burden, gratification, health and financial problems. Cluster 1 is an intermediate profile with similar characteristics to Cluster 3.
Conclusions:
Our results support the idea of considering management behaviours to identify vulnerable caregivers and highlight the deleterious role of negative control behaviours, especially when they are not offset by positive protective stimulation behaviours.
... Autoetnografiske studier har vist hvordan tap, sorg og omsorg, men også meningsfylthet preger følelser og handlinger når en er pårørende til foreldre som en mister gjennom en demenssykdom (Freeman, 2021;Hoppes, 2005;Malthouse, 2011;Wilkinson & Wilkinson, 2020). Studier av situasjonen for partnere til yngre med demens (det vil si at de er under 65 år) viser hvordan denne sykdommen fører til at livet endres totalt (Harris & Keady, 2009;Lockeridge & Simpson, 2012). Disse pårørende står i en situasjon som ofte har dyptgripende innvirkning på egen helse, der en er partner og omsorgsgiver til en syk ektefelle, men samtidig også ofte skal balansere omsorg og ansvar for barn, jobb og egne foreldre (Bakker et.al., 2013). ...
... Disse pårørende står i en situasjon som ofte har dyptgripende innvirkning på egen helse, der en er partner og omsorgsgiver til en syk ektefelle, men samtidig også ofte skal balansere omsorg og ansvar for barn, jobb og egne foreldre (Bakker et.al., 2013). Stadig økende omsorgsbyrde, lite avlastning, bekymring for familie og økonomi, sorg, sosial isolasjon og stigma, samt engstelse og tanker knyttet til ens eget liv og framtid er forhold som preger tilvaerelsen (Bakker et.al., 2013;Bergman et.al., 2016;Dourado et.al., 2017;Lockeridge & Simpson, 2012). ...
Over 100 000 personer i Norge lever med demens. En liten gruppe av disse er diagnostisert før fylte 65 og er dermed i kategorien «yngre med demens». Målet med studien presentert i denne artikkelen, er å utforske ett aspekt av å være pårørende når ens ektefelle har fått en Alzheimerdiagnose i ung alder. Problemstillingen setter søkelyset på å være pårørende og stå i en situasjon preget av omsorg og sorg og samtidig forholde seg til omverdenens spørsmål og innspill vedrørende en slik progredierende, uhelbredelig sykdom. Forskningstilnærmingen er autoetnografisk, og det empiriske materialet består av erfaringer som er opplevd og analysert gjennom en periode på flere år. Et hovedfunn i studien er betydningen av å reflektere over pårørendeerfaringer både alene og sammen med andre. Derigjennom kan en bli bevisst egne reaksjoner og emosjoner og utvikle innsikt og strategier en som pårørende i en krevende omsorgssituasjon kan møte andre med, samtidig som en kan ivareta egne følelser.
... Caregivers experience significant difficulty in coping with these circumstances and express an explicit need for age-appropriate professional support (Arai et al., 2007;Bannon et al., 2021;Lockeridge and Simpson, 2013;Millenaar et al., 2014;Millenaar et al., 2016). Currently, YOD caregivers often experience most information is too generic and focused on caregivers of persons with dementia in old age (Bannon et al., 2021;Cations et al., 2017;Mayrhofer et al., 2018;Millenaar et al., 2016). ...
Caregivers of persons with young-onset dementia (YOD) have an explicit need for tailored information and support about YOD. Therefore, during the European RHAPSODY project a web-based information and support program for YOD caregivers was developed. The program was recently tailored to the Dutch context. This study evaluates the Dutch version on user acceptability, usability, user satisfaction, and user behavior.
Methods
A cross-sectional study was conducted to evaluate the publicly available Dutch RHAPSODY program. A pop-up survey, extensive survey, and a semi-structured interview were used to evaluate how visitors perceived the program in terms of acceptability, usability, and their satisfaction. Web metrics registered user behavior. Quantitative data were analyzed using descriptive statistics and a deductive content analysis was used to analyze qualitative data.
Results
A total of 26 participants completed the pop-up survey, 19 completed the extensive survey, and 10 participated in the semi-structured interviews. Most participants were caregivers and healthcare professionals. They perceived the program as acceptable and usable in daily life and were satisfied with the quality of the content. The majority would use the program again and recommend it to others. Participants emphasized the necessity and desirability of a central platform incorporating educational and practical information about YOD. The page with an explanation about what YOD entails was most viewed (360 unique page views). Most time was spent on the page about the diagnostic process (6.5 min).
Conclusions
The Dutch RHAPSODY program showed good user acceptability, usability, and user satisfaction. The program met the need for tailored information and support regarding YOD and adds value to existing available support for YOD caregivers. Raising awareness about the program's existence among healthcare professionals may help caregivers to find appropriate post-diagnostic information. The program also provides educational opportunities for healthcare professionals.
... "Acceptance" strategies include positive evaluation, gathered helpful information and seeking social support (Papastavrou et al., 2011), while "Avoidance" comprises not registering the proper problems they usually encountered and of course diverting from the future consequences. Moreover, they cut off their emotional and personal involvement in the caregiving (Lockeridge & Simpson, 2013;Molyneaux et al., 2012;Wawrziczny et al., 2016). Papastavrou and his associates (2011), noticed that the caregivers who used "Acceptance" strategies were associated with the lower level of burden and depression. ...
Background: Worldwide, dementia is one of the foremost health challenging factors among elderly. Behavioural and psychological symptom of dementia (BPSD) has been found to be related with cognitive impairment, and it deteriorates with the progression of the disease. A majority of the persons with dementia depend partially or totally on their families for daily activities and care. Moreover, providing care for a family member with dementia has been found to be associated with caregiver’s increased level of burden and poor psychological health. Purpose of the review: This article offers a rationalized review of the dementia caregiver’s psychological health based on care demands, demographic factors and effects of different behavioural problems of the care recipients. It also offers an overview of dementia and its symptoms. Methods: Literature search was carried out using PubMed, Research Gate and Google Scholar which were published between 1990 and 2019. Key words that were mainly used for searching relevant literatures are as follows—dementia, dementia caregiver, carer, caregiving, psychological health (i.e. stress, depression, anxiety, burden and distress), demographic factors and so on. Findings: Some common disruptive behaviours such as wandering, delusion, hallucination, apathy and motor disturbances are observed in a person with dementia. Prolong exposure to these types of disrupting behaviour affects caregivers’ psychological health enormously. The other responsible factors for caregivers’ deteriorating health conditions are number of care hours/day and years, type of help provided towards care recipient’s daily activities and so on. Additionally, studies found that sociodemographic factors, less family support, lack of social activities and social interactions are some common causes of adverse psychological health conditions among family caregivers. Summary: Due to dearth of proper institutional dementia care services, family caregivers have to play the main supporting role to look after their demented family members. In order to carry out several such responsibilities, they develop many adverse health conditions, specially the deteriorating mental health condition. Literature reviews suggest that coping strategies may help to reduce the adverse psychological health condition among dementia caregivers.
... "Acceptance" strategies include positive evaluation, gathered helpful information and seeking social support (Papastavrou et al., 2011), while "Avoidance" comprises not registering the proper problems they usually encountered and of course diverting from the future consequences. Moreover, they cut off their emotional and personal involvement in the caregiving (Lockeridge & Simpson, 2013;Molyneaux et al., 2012;Wawrziczny et al., 2016). Papastavrou and his associates (2011), noticed that the caregivers who used "Acceptance" strategies were associated with the lower level of burden and depression. ...
Dementia syndromes can include language impairments (LIs) of severity extending from lexical access difficulties within anomic aphasia to non-fluent effortful speech and semantic aphasia, depending on the stage and etiology of the underlying disease. Relevant etiologies include neurodegenerative Alzheimer’s disease (AD) and non-AD dementias, such as frontotemporal lobar degeneration (FTD), Parkinson’s (PD) and Lewy body diseases, vascular and toxic alcohol-related dementia, depressive pseudodementia and mixed type dementia. Irrespective of the underlying disease, LIs interfere with social contacts and personal relationships, thus substantially reducing the quality of life and daily functioning of patients, while increasing their need for supervision and care. Socio-linguistic discourse describes such patients as experiencing “loss of self”, “no meaningful present”, “active presence of the past in the body itself”, and as the “long goodbye” (Snyder in Dementia: Mind, meaning and the person, Oxford University Press, p. 268, 2006), highlighting the stigmatization and low quality of life of dementia sufferers. In this chapter we summarize the similarities and differences in clinical and linguistic presentations of LIs in AD and the most commonly occurring types of non-AD dementias, emphasizing the decisive diagnostic and prognostic roles of LIs, as well as their implications for choice of treatment. We present an account of the neuropsychological and psycholinguistic approaches to assess LIs occurring in dementia through evaluation of language functions/domains, such as sound-based domain and lexis (naming, reading, writing), syntax (repeating, composing sentences), and semantics, pragmatics, and discourse (comprehension—auditory, semantic knowledge, understanding commands). We discuss research findings on the protective properties of cognitive reserve, second language acquisition (L2), and multilingualism, all of which can delay the onset of dementia symptoms. We make note of the available interventions in the management of LIs, which include pharmacotherapy (acetylcholinesterase inhibitors such as donezepil, galantamine, and rivastigmine), cognitive interventions (lexical-semantic therapy, action-language therapy, language socialization), and other options of person-centered care (e.g., narrative care). We also review the benefits of destigmatization activities that can be obtained through building a dementia-friendly community environment.
... International studies have demonstrated that retaining their often good physical health is a priority for people with YOD (Bakker et al., 2010), and in this context the loss of access to allied health and other services has been devastating. For care partners, service restrictions were often paired with school closures and work stressors that combined to further amplify their already high caring load (Lockeridge and Simpson, 2013). Dissatisfaction with PPE use and other risk reduction strategies among the dementia care workforce has been reported among family carers of people with dementia (Giebel et al., 2020). ...
