How People with Dementia and their Carers Adapt their Homes. A Qualitative Study

Allen, Frances; Cain, Rebecca; Meyer, Caroline

doi:10.1177/1471301217712294

Cited by 11 publications

(23 citation statements)

References 28 publications

(63 reference statements)

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“…A study specific questionnaire was developed. The questionnaire underwent a process of design including the formation of questions stemming from data collected from a previous study (Allen et al., 2017) and literature. Questions regarding computer, internet and passive information use were adapted from the U.S. Health Information National Trends Survey (HINTS) (National Institutes of Health & Services, USD of H & H, 2014) with multiple choice answers updated for a UK demographic.…”

Section: Methodsmentioning

confidence: 99%

“…Specifically, traditional sources (such as health and social care professionals, newspapers and printed media) can now be used in conjunction with more modern methods, such as the internet and social media (e.g., Altizer, Grzywacz, Quandt, Bell, & Arcury, 2014; Anderson, Nikzad-Terhune, & Gaugler, 2009; Dutta-Bergman, 2004; Sweet, Perrier, Podzyhun, & Latimer-Cheung, 2013). Despite the number of different information sources available, family and friends of those with dementia often do not feel as well informed about the condition as they would like (e.g., Allen, Cain, & Meyer, 2017; Washington, Meadows, Elliott, & Koopman, 2011).…”

Section: Introductionmentioning

confidence: 99%

“… MC SA: multiple choice single answer; MC MA: multiple choice multiple answer; Y/N: yes, no, not sure; Previous Research: derived from evidence from previous study (Allen et al., 2017); HINTS Survey: question taken from the U.S. Health Information National Trends Survey; Literature: question derived from previous published research; RQ1: where do family and friends of those with dementia currently access information regarding dementia? ; RQ2: how accessible, credible and comprehensible do family and friends of those with dementia consider the available sources of information?…”

mentioning

confidence: 99%

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Seeking relational information sources in the digital age: A study into information source preferences amongst family and friends of those with dementia

2018

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Despite an increasing number of sources providing information and advice about dementia, those living with the condition feel inadequately informed. The reasons for this remain unclear. This study has three aims: to identify where people with dementia and their carers currently access dementia-related information from; to determine how accessible, credible and comprehensible people with dementia and their carers consider the available sources of information; and to determine how people with dementia and their carers would like to receive information. An online or postal survey was completed by 171 female and 41 male participants with a close family member or friend with dementia. Accessibility above quality held the greatest influence over an individual's use of an information source. Participants preferred relational sources such as healthcare professionals as these were able to give individualised information, yet these were poorly accessible and lacked dementia specific knowledge. Therefore, individuals used non-relational sources such as the internet. However, increased use of the internet was linked to feeling overwhelmed by information. It was not the end result of the information search but the effort taken to reach the information that influenced participant's perception of information gathering. Future research should look at ways of designing and providing accessible information sources that act and feel like relational contact.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

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Seeking relational information sources in the digital age: A study into information source preferences amongst family and friends of those with dementia

2018

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“…Allen et al 56 recently described a similar trial-and-error approach to environmental adaptations being employed by community-dwelling people with tAD and their carers, but these were more often triggered by—and designed to ameliorate—difficulties associated with dominant memory problems (eg, using labels as reminders).…”

Section: Methodsmentioning

confidence: 99%

‘Because my brain isn’t as active as it should be, my eyes don’t always see’: a qualitative exploration of the stress process for those living with posterior cortical atrophy

et al. 2018

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ObjectivesTo explore the stress process for individuals living with posterior cortical atrophy (PCA) and their families.DesignA qualitative study using in-depth semi-structured dyadic and individual interviews with people living with a diagnosis of PCA and a family carer. Interview transcripts were thematically analysed.SettingParticipants’ homes.Participants20 individuals in the mild to moderate stages of PCA and 20 family carers.FindingsThree major themes were identified: (1) the diagnostic journey: mostly an unsettling and convoluted process, owing to the early age of onset, rarity and atypical symptom profile of PCA. (2) Interactions with the physical environment: profound difficulties with functional and leisure activities were usually compensated for with adaptations maximising familiarity or simplicity. (3) Implications within the psychosocial environment: symptoms impacted individuals’ sense of independence and identity and required reallocations of roles and responsibilities. Ongoing uncertainties and the progressive nature of PCA caused most dyads to take a ‘one day at a time’ approach to coping. Relatively well-preserved insight and memory were a benefit and burden, as individuals shared the illness experience with family members and also compared their current situation to pre-diagnosis. The experience was framed by background and contextual factors and understood within an ever-changing temporal context.ConclusionThe stress process in PCA is characterised by uncertainty and unpredictability from diagnosis through to ongoing management. The provision of tailored information about cortical visual problems and associated functional difficulties, time-sensitive environmental adaptations to help those with PCA to identify what and where things are and psychosocial interventions for the marital/family unit as a whole would be useful to improve both functional status and psychological well-being. Future research exploring (1) stress and coping in the later stages of PCA and (2) the nature and impact of visual impairment(s) in typical Alzheimer’s disease would be worthwhile.

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“…Dementia-specific adapted home environment and related assistive devices may be helpful for both the patient and the caregiver (300–302). Changes to home environment may result in lack of familiarity for the patient, and earlier home modifications might enable individuals with dementia to adjust to their adapted environment (303).…”

Section: Ict Assistive Devices and Domoticsmentioning

confidence: 99%

The Multidisciplinary Approach to Alzheimer's Disease and Dementia. A Narrative Review of Non-Pharmacological Treatment

Sinforiani²,

et al. 2018

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Background: Alzheimer's disease (AD) and dementia are chronic diseases with progressive deterioration of cognition, function, and behavior leading to severe disability and death. The prevalence of AD and dementia is constantly increasing because of the progressive aging of the population. These conditions represent a considerable challenge to patients, their family and caregivers, and the health system, because of the considerable need for resources allocation. There is no disease modifying intervention for AD and dementia, and the symptomatic pharmacological treatments has limited efficacy and considerable side effects. Non-pharmacological treatment (NPT), which includes a wide range of approaches and techniques, may play a role in the treatment of AD and dementia.Aim: To review, with a narrative approach, current evidence on main NPTs for AD and dementia.Methods: PubMed and the Cochrane database of systematic reviews were searched for studies written in English and published from 2000 to 2018. The bibliography of the main articles was checked to detect other relevant papers.Results: The role of NPT has been largely explored in AD and dementia. The main NPT types, which were reviewed here, include exercise and motor rehabilitation, cognitive rehabilitation, NPT for behavioral and psychological symptoms of dementia, occupational therapy, psychological therapy, complementary and alternative medicine, and new technologies, including information and communication technologies, assistive technology and domotics, virtual reality, gaming, and telemedicine. We also summarized the role of NPT to address caregivers' burden.Conclusions: Although NPT is often applied in the multidisciplinary approach to AD and dementia, supporting evidence for their use is still preliminary. Some studies showed statistically significant effect of NPT on some outcomes, but their clinical significance is uncertain. Well-designed randomized controlled trials with innovative designs are needed to explore the efficacy of NPT in AD and dementia. Further studies are required to offer robust neurobiological grounds for the effect of NPT, and to examine its cost-efficacy profile in patients with dementia.

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How People with Dementia and their Carers Adapt their Homes. A Qualitative Study

Cited by 11 publications

References 28 publications

Seeking relational information sources in the digital age: A study into information source preferences amongst family and friends of those with dementia

Seeking relational information sources in the digital age: A study into information source preferences amongst family and friends of those with dementia

‘Because my brain isn’t as active as it should be, my eyes don’t always see’: a qualitative exploration of the stress process for those living with posterior cortical atrophy

The Multidisciplinary Approach to Alzheimer's Disease and Dementia. A Narrative Review of Non-Pharmacological Treatment

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