Person-Centred Counselling for People with Dementia: Making Sense of Self
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Organisational-level interventions included a combination of: staff education, training, guidance and exposure to role modelling in how to understand and interpret verbal and non-verbal communication from the perspective of the person with dementia; and providing the person with interesting, purposeful, and meaningful things to do in their daily life, in consultation with the person, their family and caregivers. A recent study evaluating an organisation-wide PCC model in Norwegian aged care homes found a positive relationship between a person-centered organisation, care staff work practices and organizational systems established to support the model [ 52 ].
A limitation of the review was the difference in measurement points across studies, varying from three weeks in the hospital setting at follow-up to 18 months follow-up in the long-term care and community-based settings. Variance in data collection points occurred because of the different functions of the study settings and the aims of the different PCC intervention programs, as well as the differences in anticipated participant lengths-of-stay in these very different care settings.
The decision was, therefore, made to undertake an analysis of all primary outcomes with data obtained within months after baseline. This limitation needs to be considered when analysing the effects of PCC in studies within different contexts and follow-up periods. However, other than in the two studies that had very short follow-up assessment periods [ 36 , 45 ] where there was no or minimal participant dropout, the differences in the duration of PCC in the remaining 10 studies did not appear to have a measurable effect on the primary outcomes assessed.
Another limitation of the analyses is that while 10 of the12 included studies used more than one measure to assess some of the primary and secondary outcomes, the results of only one of the most frequently used primary outcome measures were analysed, e. The results may have changed if the primary outcome results had included the pooled data of all the different outcome measures used to assess the same constructs, e. A possible limitation of the review was the inclusion of studies with moderate to high risk of bias [ 37 , 46 , 49 ].
These studies had a high risk of bias in three or more areas, including for neuropsychiatric symptoms [ 37 , 46 ], agitation [ 46 ], depression [ 47 , 49 ] and quality of life [ 37 ]. Analysis of secondary outcomes was not possible because there were insufficient data using comparable instruments. In the case of activities of living, for example, it was not possible to pool the data in studies using the DCM [ 54 ] activities of living codes and data obtained with other validated measures.
As well, there was statistical heterogeneity of study results and an insufficient number of studies to undertake analyses of secondary outcomes. This review has highlighted a number of issues which should be considered when designing future research on the organization-wide implementation of PCC. It would be useful to standardize methods of education, training and supervision of PCC and person-centred recreation, social and therapy programs, in order to compare outcomes for different study populations and across various care settings, and in people with mild, moderate and severe dementia.
Minimally, the specific approaches to PCC education, training and supervision that have been employed should be reported, thus enabling comparison across studies. As well, it will be important to determine the required minimum number of hours of person-centred education, training and supervision required, the optimal dose and duration of PCC support required, and the dose of the individual components of PCC operating at the organisational level that is required, to produce positive outcomes for the person living with dementia. As different contexts of care acute, supported care housing, long-term care will determine the potential dose and duration of PCC interventions, it will be important to distinguish the immediate and longer-term outcomes for people living with dementia in these different care situations or contexts.
Additionally, further assessment of the delivery of PCC in different locations hospital and community-based settings and assessment of care provision by different types of staff, carers and family, would provide valuable information to understand how organizations can best support and deliver the PCC model across the whole organization. This is particularly important when considering how best to provide supportive services and care for people with terminal dementia in ways that are supportive of their end-of-life needs. Since there is considerable overlap between neurological symptoms, mood and quality of life in people with dementia, and multiple factors involved in their expression, it is important when assessing these outcomes to consider the inter-relationships between the person, their caregivers and features of the care environment.
It may be useful, therefore, to measure a number of dimensions associated with the outcomes of interest including physiological, psychological, spiritual, social, and personal preferences, and to recognize that various dimensions may hold different salience for individuals living with dementia. Consequently, novel and innovative approaches are required to evaluate the benefits of particular organizational systems and care practices for the individual. None of the included studies undertook a comprehensive cost-effectiveness analysis of the models of PCC implemented, therefore, future research is urgently required to assess the efficiencies as well as the effectiveness of quality aged care systems.
This systematic review of organizational-level implementation of PCC suggests that where PCC operates at the organizational level, with the full support of organizational leaders, it can increase quality of life in people living with dementia, and it can potentially improve their well-being and reduce neuropsychiatric symptoms.
While dementia is a progressive, incurable illness, improving the quality of life for people who experience it is of clinical significance. Maintaining dignity and personhood in the face of this illness is consistent with the humanistic values underpinning quality health care. Also acknowledged are members of the Cochrane Dementia and Cognitive Improvement Group who accessed potentially suitable article abstracts for the authors.
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Browse Subject Areas? Click through the PLOS taxonomy to find articles in your field. Abstract The aim of the systematic review was to determine the effectiveness of organizational-level person-centered care for people living with dementia in relation to their quality of life, mood, neuropsychiatric symptoms and function.
What is person-centred care?
Funding: The authors received no specific funding for this work. Introduction Fifty million people world-wide presently live with dementia [ 1 ] and approximately These requirements are encapsulated in the VIPS framework [ 24 ] which provides guidance on organizational-level implementation of PCC, paying attention to the following four key elements: Valuing: valuing service user and service staff. Individualized Care: Treating people as individuals. Strengths and vulnerabilities of service users are recognised across a wide range of needs; Care plans are individualized that reflect a wide range of strengths and needs; Individual care plans are reviewed on a regular basis; Service users have their own personal clothing possessions for everyday use; Individual likes and dislikes, preferences and daily routines are known about by direct care staff and are acted upon; Care staff are aware of basic individual life histories and key stories of proud times, and are used regularly; and A variety of activities are available to meet needs and abilities of all service users.
Personal perspective: looking at world from perspective of person with dementia.
What is person-centred care? | Valuing People
Service users are asked for their preferences, consent and opinion on a day-to-day basis; Staff show the ability to put themselves in the position of the person they are caring for and think about decisions from their point of view; The physical environment e. Review criteria The review of studies on PCC in healthcare services for people with dementia was undertaken in accordance with the review protocol [ 27 ].
Methodologic quality assessment. Data extraction. Review of person-centred care interventions across studies. Statistical analysis. Results Literature search and study characteristics The search yielded a total of study titles and abstracts from ALOIS [ 30 ], remained after the removal of duplicates and were subjected to title and abstract screening, and of the studies which failed to meet the review inclusion criteria [ 27 ] i.
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Download: PPT. Fig 1. Primary participant outcomes The results of analyses of pooled data for the primary participant outcomes from studies measuring these outcomes are presented in Fig 2 , followed by results of the sensitivity analysis in studies with low statistical heterogeneity in Fig 3. Neuropsychiatric symptoms. Quality of life. Secondary participant outcomes Data for secondary outcomes, function in activities of living, physical and chemical restraint and adverse events, were neither sufficient nor sufficiently similar to undertake an analysis. Discussion The review identified 12 studies that met the inclusion criteria for assessing the effectiveness of PCC delivered at the organizational level for people living with dementia as recommended in the VIPS guidelines [ 23 ] and the PCECAT instrument [ 26 ].
Limitations A limitation of the review was the difference in measurement points across studies, varying from three weeks in the hospital setting at follow-up to 18 months follow-up in the long-term care and community-based settings. Implications for research This review has highlighted a number of issues which should be considered when designing future research on the organization-wide implementation of PCC.
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Conclusions This systematic review of organizational-level implementation of PCC suggests that where PCC operates at the organizational level, with the full support of organizational leaders, it can increase quality of life in people living with dementia, and it can potentially improve their well-being and reduce neuropsychiatric symptoms. Supporting information. S1 Table. Included studies measurement references. S2 Table. S1 Fig.
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