Exploring the experiences of people with mild cognitive impairment and their caregivers with particular reference to healthcare – a qualitative study

Dean, Katherine; Jenkinson, Crispin; Wilcock, Gordon; Walker, Zuzana

doi:10.1017/s104161021300207x

Cited by 24 publications

(48 citation statements)

References 29 publications

(42 reference statements)

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“…The range of needs described in themes 1 and 2 are generally consistent with prior research on dementia care in healthcare settings. Needs commonly described include receiving relevant information about dementia management, disease progression, and symptoms, provider's lack of knowledge or inability to provide useful community resources, and accessing sources of support for psychological distress . Only one study described theneed for PwD/caregivers to have information about whether or where to seek treatment for acute health or behavior‐related problems—corroborating our stakeholders' experiences about accessing emergency services out of “desperation” and lack of knowledge about other options .…”

Section: Discussionmentioning

confidence: 64%

“…Needs commonly described include receiving relevant information about dementia management, disease progression, and symptoms, provider's lack of knowledge or inability to provide useful community resources, and accessing sources of support for psychological distress. 4,26,[28][29][30][31][32][33][34][35] Only one study described theneed for PwD/caregivers to have information about whether or where to seek treatment for acute health or behavior-related problems-corroborating our…”

Section: Discussionmentioning

confidence: 77%

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Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Jacobsohn

Hollander

Beck

et al. 2019

J American Geriatrics Society

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BACKGROUND/OBJECTIVES People with dementia (PwD) frequently use emergency care services. To mitigate the disproportionately high rate of emergency care use by PwD, an understanding of contributing factors driving reliance on emergency care services and identification of feasible alternatives are needed. This study aimed to identify clinician, caregiver, and service providers' views and experiences of unmet needs leading to emergency care use among community‐dwelling PwD and alternative ways of addressing these needs. DESIGN Qualitative, employing semistructured interviews with clinicians, informal caregivers, and aging service providers. SETTING Wisconsin, United States. PARTICIPANTS Informal caregivers of PwD (n = 4), emergency medicine physicians (n = 4), primary care physicians (n = 5), geriatric healthcare providers (n = 5), aging service providers (n = 6), and community paramedics (n = 3). MEASUREMENTS Demographic characteristics of participants and data from semistructured interviews. FINDINGS Four major themes were identified from interviews: (1) system fragmentation influences emergency care use by PwD, (2) informational, decision‐making, and social support needs influence emergency care use by PwD, (3) emergency departments (EDs) are not designed to optimally address PwD and caregiver needs, and (4) options to prevent and address emergency care needs of PwD. CONCLUSION Participants identified numerous system and individual‐level unmet needs and offered many recommendations to prevent or improve ED use by PwD. These novel findings, aggregating the perspectives of multiple dementia‐care stakeholder groups, serve as the first step to developing interventions that prevent the need for emergency care or deliver tailored emergency care services to this vulnerable population through new approaches. J Am Geriatr Soc 67:711–718, 2019.

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Section: Discussionmentioning

confidence: 64%

Section: Discussionmentioning

confidence: 77%

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Jacobsohn

Hollander

Beck

et al. 2019

J American Geriatrics Society

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“…by a GP) when reaching a low ebb. This underlines the importance of appropriate support at all stages of the caring journey, starting at diagnosis, when carers need time to ask questions and process information (Dean, Jenkinson, Wilcock, & Walker, ), through to managing an escalation in care and during crises, such as hospitalisations (Jurgens, Clissett, Gladman, & Harwood, ).…”

Section: Discussionmentioning

confidence: 99%

I becomes we, but where is me? The unity–division paradox when caring for a relative with dementia: A qualitative study

Tierney

Tutton

Seers

2019

Int J Older People Nursing

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Background The number of older people living with dementia is increasing. Admiral Nurses work with these individuals and their families in the UK to manage challenges associated with the condition, providing guidance, advice and reassurance, alongside practical solutions. Aim To explore the input of Admiral Nurses as part of people's journey to becoming and being a carer for someone with dementia. Design A qualitative study was conducted to describe and understand how Admiral Nurses are experienced and encountered by carers as part of their narrative around supporting a relative with dementia. Methods Semi‐structured interviews were conducted with 19 carers between November 2017–April 2018. They lasted between 45 and 90 min. Thematic analysis was used to interpret data. Findings An overarching concept of “the unity–division paradox” was derived from the data. This highlights the complex interchange between the carer with (a) the person with dementia, (b) other individuals and (c) external services. Such interactions can make carers feel part of a larger network (unity) but also as if they are on their own, fighting on behalf of the person with dementia (division). This concept was underpinned by the following themes: (a) I becomes we; (b) My private world is encroached by dementia; (c) I’m left navigating an unwieldy system; (d) Are you with or against us?; and (e) Recreating boundaries to rediscover me. Conclusion The identity and unique characteristics and interests of those caring for a person with dementia may be lost as they encounter tensions associated with the unity–division paradox. Admiral Nurses can help carers feel less alone in managing internal and external struggles by supporting them to do their best for a loved one with dementia. Implications for practice Understanding carers’ experience and supporting their work may help to increase and sustain their capacity to provide care.

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“…Most caregivers turn to a primary care provider (PCP) for information, but the information obtained there is often limited [ 5 , 13 – 15 ]. Randomized clinical trials of more than 200 psychoeducational interventions support efficacy in improving knowledge and support of dementia caregivers [ 16 ].…”

Section: Introductionmentioning

confidence: 99%

In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers’ education needs, barriers, and preferences

et al. 2016

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BackgroundMost patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology.MethodsWe aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes.ResultsWe interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources.ConclusionsThese findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and describe diverse cognitive, functional and behavioral symptoms that lead to dementia, and recognize the benefits of early detection in accessing information regarding multi-modality management and care; 2.) Improved methods are needed for PCPs to detect and manage cognitive and behavioral changes, as well as mechanisms that facilitate the busy PCP, either directly or via referral, to provide caregiver information, education, support, and services. The critical relationship between caregivers and PCPs should not be circumvented but should be facilitated to provide more effective guidance regarding dementia caregiver needs.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-016-0338-7) contains supplementary material, which is available to authorized users.

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Exploring the experiences of people with mild cognitive impairment and their caregivers with particular reference to healthcare – a qualitative study

Cited by 24 publications

References 29 publications

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

I becomes we, but where is me? The unity–division paradox when caring for a relative with dementia: A qualitative study

In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers’ education needs, barriers, and preferences

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