Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia

Kutzleben, Milena von; Schmid, Wolfgang P.; Halek, Margareta; Holle, Bernhard; Bartholomeyczik, Sabine

doi:10.1080/13607863.2011.614594

Cited by 130 publications

(106 citation statements)

References 38 publications

(79 reference statements)

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“…It has been emphasized that findings on home-dwelling PWDs should be implemented in applied dementia care (66), and the clinically significant results of our study demonstrate the value of implementation in clinical care. The average increase of 3.16 points in the BBS in the AAA group suggests c.20% reduction in the risk of falls (67).…”

Section: Discussionmentioning

confidence: 82%

Effect of animal-assisted activity on balance and quality of life in home-dwelling persons with dementia

et al. 2016

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Purpose of the study was to examine if animal-assisted activity with a dog (AAA) in homedwelling persons with dementia (PWDs) attending day-care centers would have an effect on factors related to risk of fall accidents, with balance (Berg balance scale) and quality of life (Quality of Life in Late-stage Dementia) as main outcome. The project was conducted as a prospective and cluster-randomized multicenter trial with a follow-up. 16 adapted day-care centers recruited respectively 42 (intervention group) and 38 (control group with treatment as usual) home-dwelling PWDs. The intervention consisted of 30 min sessions with AAA led by a qualified dog handler twice a week for 12 weeks in groups of 3-7 participants. The significant positive effect on balance indicates that AAA might work as a multifactorial intervention in dementia care and have useful clinical implication by affecting risk of fall.

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Section: Discussionmentioning

confidence: 82%

Effect of animal-assisted activity on balance and quality of life in home-dwelling persons with dementia

et al. 2016

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“…prefer to be included in this process' (p. 378). 161 However, von Kutzleben et al's meta-review does conclude that people with dementia's 'needs and demands do not differ significantly from those of other groups of patients with chronic conditions' (p. 378). 161 Although we agree that there are similar needs and issues arising across the LTCs from these PRISMS reviews (e.g.…”

Section: Componentsmentioning

confidence: 99%

“…There has been a previous qualitative meta-review on the subjective experiences of people with dementia, 161 which had a broader inclusion criterion for review types than our meta-review. For quality control, we only included reviews that were considered to be systematic (see Chapter 5).…”

mentioning

confidence: 99%

“…Our meta-review findings agree with von Kutzleben et al's meta-review that 'people with dementia experience a whole range of emotions' when 'coming to terms with the disease and maintaining normality' (p. 378). 161 They concluded that 'with regard to expectations from the side of professional health care, the need for accompanying, continuous support and counselling appeared to be central. Furthermore, disclosure of diagnosis represents a critical stage .…”

mentioning

confidence: 99%

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A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic RevIew of Self-Management Support for long-term conditions

Taylor

Pinnock

Epiphaniou

et al. 2014

Health Services and Delivery Research

336

451

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BackgroundDespite robust evidence concerning self-management for some long-term conditions (LTCs), others lack research explicitly on self-management and, consequently, some patient groups may be overlooked.AimTo undertake a rapid, systematic overview of the evidence on self-management support for LTCs to inform health-care commissioners and providers about what works, for whom, and in what contexts.MethodsSelf-management is ‘the tasks . . . individuals must undertake to live with one or more chronic conditions . . . [including] . . . having the confidence to deal with medical management, role management and emotional management of their conditions’. We convened an expert workshop and identified characteristics of LTCs potentially of relevance to self-management and 14 diverse exemplar LTCs (stroke, asthma, type 2 diabetes mellitus, depression, chronic obstructive pulmonary disease, chronic kidney disease, dementia, epilepsy, hypertension, inflammatory arthropathies, irritable bowel syndrome, low back pain, progressive neurological disorders and type 1 diabetes mellitus). For each LTC we conducted systematic overviews of systematic reviews of randomised controlled trials (RCTs) of self-management support interventions (‘quantitative meta-reviews’); and systematic overviews of systematic reviews of qualitative studies of patients’ experiences relating to self-management (‘qualitative meta-reviews’). We also conducted an original systematic review of implementation studies of self-management support in the LTCs. We synthesised all our data considering the different characteristics of LTCs. In parallel, we developed a taxonomy of the potential components of self-management support.ResultsWe included 30 qualitative systematic reviews (including 515 unique studies), 102 quantitative systematic reviews (including 969 RCTs), and 61 studies in the implementation systematic review. Effective self-management support interventions are multifaceted, should be tailored to the individual, their culture and beliefs, a specific LTC and position on the disease trajectory, and underpinned by a collaborative/communicative relationship between the patient and health-care professional (HCP) within the context of a health-care organisation that actively promotes self-management. Self-management support is a complex intervention and although many components were described and trialled in the studies no single component stood out as more important than any other. Core components include (1) provision of education about the LTC, recognising the importance of understanding patients’ pre-existing knowledge and beliefs about their LTC; (2) psychological strategies to support adjustment to life with a LTC; (3) strategies specifically to support adherence to treatments; (4) practical support tailored to the specific LTC, including support around activities of daily living for disabling conditions, action plans in conditions subject to marked exacerbations, intensive disease-specific training to enable self-management of specific clinical tasks; and (5) social support as appropriate. Implementation requires a whole-systems approach which intervenes at the level of the patient, the HCP and the organisation. The health-care organisation is responsible for providing the means (both training and time/material resources) to enable HCPs to implement, and patients to benefit from, self-management support, regularly evaluating self-management processes and clinical outcomes. More widely there is a societal need to address public understanding of LTCs. The lack of public story for many conditions impacted on patient help-seeking behaviour and public perceptions of need.ConclusionsSupporting self-management is inseparable from the high-quality care for LTCs. Commissioners and health-care providers should promote a culture of actively supporting self-management as a normal, expected, monitored and rewarded aspect of care. Further research is needed to understand how health service managers and staff can achieve this culture change in their health-care organisations.Study registrationThis study is registered as PROSPERO CRD42012002898.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…The desire to maintain what is familiar is also a way of preserving normality and maintaining identity for Persons with dementia (von Kutzleben, Schmid, Halek, Holle, & Bartholomeyczik, 2012). This may explain the participants using of phrases such as 'have to' or 'need to' in the response to questions about feelings towards equipment.…”

Section: Discussionmentioning

confidence: 99%

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

2017

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The objective was to explore the ways in which people with dementia and their carers adapt their homes, including the barriers and use of available information. Semi-structured interviews were conducted with ten people with dementia and their informal carer. The collected data were analysed using thematic analysis. Three core themes emerged: Maintaining familiarity and coping with change, Having knowledge and finding knowledge and Meeting challenges through home adaptation. The most significant barriers to making home adaptations were lack of knowledge and maintaining familiarity. Having more information and making home modifications earlier might enable individuals with dementia to adjust to their adapted environment.

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Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia

Abstract: PwD are well able to express their needs. They should be included in research since they can provide valuable findings. Furthermore, those findings should be implemented in applied dementia care.

Cited by 130 publications

References 38 publications

Effect of animal-assisted activity on balance and quality of life in home-dwelling persons with dementia

Effect of animal-assisted activity on balance and quality of life in home-dwelling persons with dementia

A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic RevIew of Self-Management Support for long-term conditions

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

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