The family’s experience and perception of phases and roles in the progression of dementia: An explorative, interview-based study

Clemmensen, Trine Holt; Busted, Laila Mohrsen; Søborg, Jane; Poul, Bruun

doi:10.1177/1471301216682602

Cited by 21 publications

(26 citation statements)

References 40 publications

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“…Their perspectives are more in line with those of the professionals involved. This is in line with the work of Clemmensen et al 39 who found differences between the ‘protective relative’ and the ‘decisive relative’. The protective relative usually lives with the person with dementia and tends to protect the relationship with the person, conceal carer burden and resist change.…”

Section: Discussionsupporting

confidence: 93%

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

et al. 2017

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ObjectiveTo explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.DesignA qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction.SettingCommunity settings and nursing homes in the Netherlands.Participants19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers).ResultsThe participants’ responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare.ConclusionShared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

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Section: Discussionsupporting

confidence: 93%

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

et al. 2017

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“…Being able to recognise your own needs can be argued as being part of a transition process (58). Carers may not have the ability to acknowledge how demanding the situation is to themselves, and they may not be able to recognise their own support needs until they have come to terms with how the dementia disease affect themselves even in the early stages of caring (24,57). In addition, it is paramount that professionals identify carers' support needs in a timely manner, as minor problems may accumulate and spin out of control without carers realising it (57).…”

Section: Discussionmentioning

confidence: 99%

“…However, these studies have a narrow focus on support needs in relation to disease severity of the person cared for. When identifying carers' individual support needs, a more appropriate approach may instead depend on the relationship to the person with dementia (23), and carers own experience of phases due to the challenges of adapting to changes throughout the progression of dementia (24). Allowing a broader focus, a framework to understand different expressions of support needs is defined by four types of needs: felt, normative, comparative and expressed needs (19).…”

Section: Introductionmentioning

confidence: 99%

“…Several studies describe the experience of caring for a person with dementia (20,(26)(27)(28). In common, carers experience substantial changes in the relationship to the person with dementia (20,28) which calls for carers to manage new roles (27,29) and sets high expectations on how to adapt and adjust in daily life when caring for a person with dementia (24). Although few studies have directly investigated carers' support needs as the primary study objective, a systematic review of carers needs shows that carers in general need information on how to provide the best care and how to manage their own physical and emotional health (20).…”

Section: Introductionmentioning

confidence: 99%

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'I know his needs better than my own' – carers’ support needs when caring for a person with dementia

Clemmensen

Lauridsen

Andersen‐Ranberg

et al. 2020

Scandinavian Caring Sciences

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Background Caring for a person with dementia predisposes informal carers (carers) to mental and physical disability. Carers tend to focus on the needs of the person with dementia and have difficulties expressing their own needs for support. No instrument has yet been developed to directly assess carers’ support needs. The aim of this study is to clarify the main categories of carers’ support needs to inform future development of an instrument to assess carers’ support needs. Methods A qualitative approach combining focus group interviews with carers and professionals and individual interviews were used. Results Carers’ support needs were categorised into four areas: (i) daily life when caring for a person with dementia, (ii) focus on themselves, (iii) maintain own well‐being, and (iv) communicate and interact with surroundings. Discussion Carers have support needs in common regardless of the relation to the person with dementia. Carers tend to focus on the needs of the person with dementia, thus not knowing their own needs. The four main categories clarified in this study may inform the foundation of developing an instrument to facilitate dialogue between carers and professionals with the purpose of assessing carers’ support needs.

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“…Extensive scientific studies of various support programmes show inconsistent results. However, several studies emphasise the importance of access to various forms of support, adapted to families' unique situations (Clemmensen et al, 2019;Strøm and Dreyer, 2019;Tomar et al, 2019).…”

Section: Kontakt / Journal Of Nursing and Social Sciences Related To mentioning

confidence: 99%

"I need you to pick him up." Next of kin's experiences with social support in dementia

Fjetland¹,

Tokovská²

2021

Kontakt

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Introduction: Demographic changes entail an increasing incidence of dementia. Next of kin experience challenges in health due to a mismatch between social support and burdens of care in everyday life. The aim of the study was to contribute to knowledge about what characterises the experience and learning of social support among the next of kin of people with dementia-and how this experience can be understood. Methods: The study used a qualitative research design. The sample contained thirteen persons participating in three focus group interviews, six women and seven men in different next of kin roles, experiencing different phases of dementia, and from both rural and urban municipalities in Norway. The study was approved by the Norwegian Centre of Research Data and informed consent obtained from all participants. The transcribed interviews were analysed using narrative analysis with four main readings. Results: The participants focused on their entire life situation. They pointed to extensive changes in their life situations over a long period of time, where the need for social support persisted and changed. Three thematic characteristics of social support have been analysed: Acknowledging dramatic change; Ensuring the right help at the right time; and Self-taught social support. Conclusions: Based on the results of the study, a life course perspective, continuity, and focus on communicative competence in enhancing social support are central to the experience of social support for the next of kin of people with dementia.

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The family’s experience and perception of phases and roles in the progression of dementia: An explorative, interview-based study

Cited by 21 publications

References 40 publications

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

'I know his needs better than my own' – carers’ support needs when caring for a person with dementia

"I need you to pick him up." Next of kin's experiences with social support in dementia

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