Research

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15 pages, 750 KiB

Open AccessArticle

Lived Experience of Dementia in the New Zealand Indian Community: A Qualitative Study with Family Care Givers and People Living with Dementia

by Rita V. Krishnamurthi, Ekta Singh Dahiya, Reshmi Bala, Gary Cheung, Susan Yates and Sarah Cullum

Int. J. Environ. Res. Public Health 2022, 19(3), 1432; https://doi.org/10.3390/ijerph19031432 - 27 Jan 2022

Cited by 4 | Viewed by 2525

Abstract

Currently, there are estimated to be 70,000 people living with dementia in Aotearoa, New Zealand (NZ). This figure is projected to more than double by 2040, but due to the more rapid growth of older age groups in non-European populations, prevalence will at [...] Read more.

Currently, there are estimated to be 70,000 people living with dementia in Aotearoa, New Zealand (NZ). This figure is projected to more than double by 2040, but due to the more rapid growth of older age groups in non-European populations, prevalence will at least triple amongst the NZ Indian population. The impact of dementia in the NZ Indian community is currently unknown. The aim of this study was to explore the lived experiences of NZ Indians living with dementia and their caregivers. Ten caregivers (age range: 41–81) and five people living with mild dementia (age range: 65–77) were recruited from a hospital memory service and two not-for-profit community organisations in Auckland, Aotearoa, NZ. Semi-structured interviews were conducted by bilingual/bicultural researchers and transcribed for thematic analysis in the original languages. Dementia was predominantly thought of as being part of normal ageing. Getting a timely diagnosis was reported as difficult, with long waiting times. Cultural practices and religion played a large part in how both the diagnosis and ongoing care were managed. Caregivers expressed concerns about societal stigma and about managing their own health issues, but the majority also expressed a sense of duty in caring for their loved ones. Services were generally well-received, but gaps were identified in the provision of culturally appropriate services. Future health services should prioritise a timely diagnosis, and dementia care services should consider specific cultural needs to maximise uptake and benefit for Indian families living with dementia. Full article

(This article belongs to the Special Issue Diagnosis and Healthcare for Dementias)

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13 pages, 544 KiB

Open AccessArticle

The Understanding and Experiences of Living with Dementia in Chinese New Zealanders

by Gary Cheung, April Yuehan Su, Karen Wu, Blake Yue, Susan Yates, Adrian Martinez Ruiz, Rita Krishnamurthi and Sarah Cullum

Int. J. Environ. Res. Public Health 2022, 19(3), 1280; https://doi.org/10.3390/ijerph19031280 - 24 Jan 2022

Cited by 4 | Viewed by 3225

Abstract

Little is known about the lived experience of dementia in the New Zealand Chinese community. This study aims to explore the understanding and experiences of living with dementia in Chinese New Zealanders. Participants were recruited from a memory service and a community dementia [...] Read more.

Little is known about the lived experience of dementia in the New Zealand Chinese community. This study aims to explore the understanding and experiences of living with dementia in Chinese New Zealanders. Participants were recruited from a memory service and a community dementia day programme. In-depth interviews were conducted by bilingual and bicultural researchers. The recorded interviews were transcribed and thematically analysed. Sixteen people living with dementia and family carers participated in this study. The first theme revealed the lack of understanding of dementia prior to diagnosis, the commonly used term of “brain shrinkage” and that dementia is associated with getting older. The second theme covered the symptoms experienced by people with dementia and how family carers found anhedonia and apathy particularly concerning. The third theme highlighted the tension between cultural obligation and carer stress. The fourth theme is about the stigma attached to dementia. Our results provide some insight into ways to improve dementia care for Chinese New Zealanders, including targeted psychoeducation in the Chinese community to improve awareness and to reduce stigma, access to person-centred interventions, and learning about strategies for healthy ageing to live well with dementia, and emotional support and psychoeducation for family carers to reduce carer stress. Full article

(This article belongs to the Special Issue Diagnosis and Healthcare for Dementias)

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13 pages, 839 KiB

Open AccessArticle

The Usefulness of Evaluating Performance of Activities in Daily Living in the Diagnosis of Mild Cognitive Disorders

by Patricia De Vriendt, Elise Cornelis, Wilfried Cools and Ellen Gorus

Int. J. Environ. Res. Public Health 2021, 18(21), 11623; https://doi.org/10.3390/ijerph182111623 - 05 Nov 2021

Cited by 5 | Viewed by 2053

Abstract

The Assessment of Activities of Daily Living (ADL) is paramount to ensure the accurate early diagnosis of neurocognitive disorders. Unfortunately, the most common ADL tools are limited in their use in a diagnostic process. Hence, we set out to validate a tool to [...] Read more.

The Assessment of Activities of Daily Living (ADL) is paramount to ensure the accurate early diagnosis of neurocognitive disorders. Unfortunately, the most common ADL tools are limited in their use in a diagnostic process. Hence, we set out to validate a tool to evaluate basic (b-), instrumental (i-), and advanced (a-) ADL called the Brussels Integrated Activities of Daily Living Inventory (BIA). At the geriatric day hospital of the University Hospital Brussels (Belgium) older persons (65+) labelled as Cognitively Healthy Persons (CHP) (n = 47), having a Mild Cognitive Impairment (MCI) (n = 39), and having Alzheimer’s disease (AD) (n = 44) underwent a diagnostic procedure for neurocognitive disorders. Additionally, the BIA was carried out. An exploration using both (cumulative) logistic regressions and conditional inference trees aimed to select the most informative scales to discriminate between the HCP, persons with MCI and AD. The distinction between CHP and MCI and between MCI and AD was moderately successful with the i-ADLs, in addition to age. Therefore, it is advisable to conduct a multidomain assessment in which the i-ADL could serve as non-invasive and non-time-consuming screening, while the BIA might be useful for diagnostics and disease management. Full article

(This article belongs to the Special Issue Diagnosis and Healthcare for Dementias)

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9 pages, 1270 KiB

Open AccessArticle

Performance of the Cognitive Performance Scale of the Resident Assessment Instrument (interRAI) for Detecting Dementia amongst Older Adults in the Community

by Susan Gee, Matthew Croucher and Gary Cheung

Int. J. Environ. Res. Public Health 2021, 18(13), 6708; https://doi.org/10.3390/ijerph18136708 - 22 Jun 2021

Cited by 4 | Viewed by 2378

Abstract

The Cognitive Performance Scale (CPS) in the widely used interRAI suite of instruments is of interest to clinicians and policy makers as a potential screening mechanism for detecting dementia. However, there has been little evaluation of the CPS in home care settings. This [...] Read more.

The Cognitive Performance Scale (CPS) in the widely used interRAI suite of instruments is of interest to clinicians and policy makers as a potential screening mechanism for detecting dementia. However, there has been little evaluation of the CPS in home care settings. This retrospective diagnostic study included 134 older adults (age ≥ 65) who were discharged from two acute psychogeriatric inpatient units or assessed in two memory clinics. The reference test was a diagnosis of clinical dementia, and the index test was interRAI CPS measured within 90 days of discharge. The overall accuracy of the CPS was good, with an area under the Receiver Operating Characteristic curve of 0.82 (95% CI = 0.75–0.89). The optimal cut point was 1/2, coinciding with the recommended cut point, with good sensitivity (0.90, 95% CI = 0.81–0.96) but poor specificity (0.60, 95% CI = 0.46–0.72). Positive predictive value improved from 0.72 (95% CI = 0.66–0.78) to 0.89 (95% CI = 0.75–0.96) when using a cut point of 2/3 instead of 1/2. If the results of the present study are replicated with more generalisable interRAI samples, older adults with a CPS of 3 or above, but without a formal diagnosis of dementia, should be referred for further cognitive assessment. Full article

(This article belongs to the Special Issue Diagnosis and Healthcare for Dementias)

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14 pages, 346 KiB

Open AccessArticle

“He Just Doesn’t Want to Get Out of the Chair and Do It”: The Impact of Apathy in People with Dementia on Their Carers

by Chern Yi Marybeth Chang, Waqaar Baber, Tom Dening and Jennifer Yates

Int. J. Environ. Res. Public Health 2021, 18(12), 6317; https://doi.org/10.3390/ijerph18126317 - 11 Jun 2021

Cited by 12 | Viewed by 3018

Abstract

Apathy, defined as a lack of motivation, is a prevalent and persistent behavioural and psychological symptom of dementia. Limited research suggests that apathy is associated with increased carer burden, but there are no studies investigating carers’ subjective experiences of apathy. This study aimed [...] Read more.

Apathy, defined as a lack of motivation, is a prevalent and persistent behavioural and psychological symptom of dementia. Limited research suggests that apathy is associated with increased carer burden, but there are no studies investigating carers’ subjective experiences of apathy. This study aimed to fill this gap and explore the lived experience of apathy in dementia from the perspectives of the people with dementia and their carers. This article reports on the carers’ perspectives. Six dyads of people with dementia and carers participated in semi-structured interviews, which were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: (1) achieving a balance of conflicting emotions—the challenges of apathy led to feelings of guilt, acceptance, and frustration; (2) new roles imposed by caring, which involved taking on new responsibilities and promoting remaining interests of person with dementia; and (3) having a life of one’s own—coping with apathy by talking to others, and spending time away from the caring role. This study highlighted that carers are caught in a struggle between wanting to involve the person with dementia in decisions and finding that they cannot if they want to overcome the hurdle of apathy. Implications of this study suggest that a wider understanding of apathy at a societal level could lead to the provision of a helpful forum for carers to share their experiences. Full article

(This article belongs to the Special Issue Diagnosis and Healthcare for Dementias)

16 pages, 524 KiB

Open AccessArticle

Diagnostic Accuracy of 10/66 Dementia Protocol in Fijian-Indian Elders Living in New Zealand

by Adrian Martinez-Ruiz, Rita Krishnamurthi, Ekta Singh Dahiya, Reshmi Rai-Bala, Sanjalin Naicker, Susan Yates, Claudia Rivera Rodriguez, Gary Cheung, Makarena Dudley, Ngaire Kerse and Sarah Cullum

Int. J. Environ. Res. Public Health 2021, 18(9), 4870; https://doi.org/10.3390/ijerph18094870 - 03 May 2021

Cited by 3 | Viewed by 2648

Abstract

The 10/66 dementia protocol was developed as a language and culture-fair instrument to estimate the prevalence of dementia in non-English speaking communities. The aim of this study was to validate the 10/66 dementia protocol in elders of Indian ethnicity born in the Fiji [...] Read more.

The 10/66 dementia protocol was developed as a language and culture-fair instrument to estimate the prevalence of dementia in non-English speaking communities. The aim of this study was to validate the 10/66 dementia protocol in elders of Indian ethnicity born in the Fiji Islands (Fijian-Indian) living in New Zealand. To our knowledge, this is the first time a dementia diagnostic tool has been evaluated in the Fijian-Indian population in New Zealand. We translated and adapted the 10/66 dementia protocol for use in in Fijian-Indian people. Individuals (age ≥ 65) who self-identified as Fijian-Indian and had either been assessed for dementia at a local memory service (13 cases, eight controls) or had participated in a concurrent dementia prevalence feasibility study (eight controls) participated. The sensitivity, specificity, positive predictive value, and Youden’s index were obtained by comparing the 10/66 diagnosis and its sub-components against the clinical diagnosis (reference standard). The 10/66 diagnosis had a sensitivity of 92.3% (95% CI 70.3–99.5), specificity of 93.8% (95% CI 75.3–99.6), positive predictive value of 92.3% (95% CI 70.3–99.5), and negative predictive value of 93.8% (95% CI 75.3–99.6). The study results show that the Fijian-Indian 10/66 dementia protocol has adequate discriminatory abilities to diagnose dementia in our sample. This instrument would be suitable for future dementia population-based studies in the Fijian-Indian population living in Aotearoa/New Zealand or the Fiji-Islands. Full article

(This article belongs to the Special Issue Diagnosis and Healthcare for Dementias)

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13 pages, 717 KiB

Open AccessArticle

The Experience of Apathy in Dementia: A Qualitative Study

by Waqaar Baber, Chern Yi Marybeth Chang, Jennifer Yates and Tom Dening

Int. J. Environ. Res. Public Health 2021, 18(6), 3325; https://doi.org/10.3390/ijerph18063325 - 23 Mar 2021

Cited by 9 | Viewed by 4666

Abstract

We aimed to explore and gain an understanding into how people with dementia experience apathy, and consequently suggest effective interventions to help them and their carers. Twelve participants (6 dyads of 6 people with dementia and their family carers) were recruited from “memory [...] Read more.

We aimed to explore and gain an understanding into how people with dementia experience apathy, and consequently suggest effective interventions to help them and their carers. Twelve participants (6 dyads of 6 people with dementia and their family carers) were recruited from “memory cafes” (meeting groups for people with dementia and their families), social groups, seminars, and patient and public involvement (PPI) meetings. People with dementia and their carers were interviewed separately and simultaneously. Quantitative data were collected using validated scales for apathy, cognition, anxiety, and depression. The interviews were semi-structured, focusing on the subjective interpretation of apathy and impacts on behaviour, habits, hobbies, relationships, mood, and activities of daily living. Interviews were recorded and transcribed. Transcripts were analysed using interpretative phenomenological analysis (IPA), which generated codes and patterns that were collated into themes. Four major themes were identified, three of which highlighted the challenging aspects of apathy. One described the positive aspects of the individuals’ efforts to overcome apathy and remain connected with the world and people around them. This study is the first to illustrate the subjective experience of apathy in dementia, portraying it as a more complex and active phenomenon than previously assumed. Apathy and its effects warrant more attention from clinicians, researchers, and others involved in dementia care. Full article

(This article belongs to the Special Issue Diagnosis and Healthcare for Dementias)

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11 pages, 320 KiB

Open AccessArticle

Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia

by Carmen K.M. Ng, Dara K.Y. Leung, Xinxin Cai and Gloria H.Y. Wong

Int. J. Environ. Res. Public Health 2021, 18(6), 2956; https://doi.org/10.3390/ijerph18062956 - 13 Mar 2021

Cited by 8 | Viewed by 2593

Abstract

Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. This study examined the relationship between perceived help-seeking [...] Read more.

Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. This study examined the relationship between perceived help-seeking difficulty and carer burden, and the barriers contributing to perceived difficulty. We interviewed 110 carers accessing a community-based dementia assessment service for suspected dementia of a family member for their perceived difficulty, delays, and barriers in help-seeking, and carers burden in terms of role strain, self-criticism, and negative emotions. Linear regression models showed that perceived help-seeking difficulty is associated with carer self-criticism, while carer role strain and negative emotions are associated with symptom severity of the person with dementia but not help-seeking difficulty. Inadequate knowledge about symptoms, service accessibility, and affordability together explained more than half of the variance in perceived help-seeking difficulty (Nagelkerke R² = 0.56). Public awareness about symptoms, support in navigating service, and financial support may reduce perceived difficulty in help-seeking, which in turn may reduce carer self-criticism during the early course of illness. Full article

(This article belongs to the Special Issue Diagnosis and Healthcare for Dementias)

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21 pages, 1149 KiB

Open AccessSystematic Review

Mindfulness-Based Cognitive Therapy for Stress Reduction in Family Carers of People Living with Dementia: A Systematic Review

by Emme Chacko, Benjamin Ling, Nadav Avny, Yoram Barak, Sarah Cullum, Fred Sundram and Gary Cheung

Int. J. Environ. Res. Public Health 2022, 19(1), 614; https://doi.org/10.3390/ijerph19010614 - 05 Jan 2022

Cited by 9 | Viewed by 5714

Abstract

The prevalence of dementia is increasing and the care needs of people living with dementia are rising. Family carers of people living with dementia are a high-risk group for psychological and physical health comorbidities. Mindfulness-based interventions such as mindfulness-based cognitive therapy show potential [...] Read more.

The prevalence of dementia is increasing and the care needs of people living with dementia are rising. Family carers of people living with dementia are a high-risk group for psychological and physical health comorbidities. Mindfulness-based interventions such as mindfulness-based cognitive therapy show potential for reducing stress experienced by family carers of people living with dementia. This study aims to systematically assess the efficacy of mindfulness-based cognitive therapy in reducing stress experienced by family carers of people living with dementia. Electronic databases including MEDLINE, APA PsycINFO, EMBASE, CINAHL, Scopus, Web of Science, Cochrane Library, AMED, ICTRP, and ALOIS were searched for relevant studies up to August 2020. All types of intervention studies were included. Quantitative findings were explored. Seven studies were eligible for inclusion. The analysis showed that there was a statistically significant reduction in self-rated carer stress in four studies for the mindfulness-based cognitive therapy group compared to controls. One study that was adequately powered also showed reductions in carer burden, depression, and anxiety compared to control. Mindfulness-based cognitive therapy appears to be a potentially effective intervention for family carers of people living with dementia, but large, high-quality randomized controlled trials in ethnically diverse populations are required to evaluate its effectiveness. Full article

(This article belongs to the Special Issue Diagnosis and Healthcare for Dementias)

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