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The population is ageing, and dementia is the greatest global challenge for health and social care in the twenty-first century.1 A recent review estimated that the financial cost of dementia overall to the United Kingdom is £34.7 billion, and this is set to rise sharply over the next two decades to £94.1 billion in 2040.2 In the United Kingdom, there are currently around 850,000 people living with dementia, and this is expected to almost triple by 2050.3 While approximately two-thirds of these people with dementia live in the community,4 one-third are living alone in their own homes5 and are supported mainly by their families.6,7 Dementia symptoms can occur alongside other mental health conditions, including depression and anxiety,8 together with an increased risk of physical health co-morbidities.1 The progressive nature of dementia is often coupled with other health and social needs, and management is complex.9 Given the multifaceted nature of dementia, crises can often occur and lead to hospital admissions and care home placements.10,11 Consequently, people with dementia account for 42% of people over the age of 70 who experienced unplanned admissions to hospital, rising to 48% of people aged over 80 years.12 However, people with dementia have poorer outcomes when admitted to hospital, including increased confusion, risk of infection, longer bed stays and lower quality of life.13
The Camberwell Assessment of Need for the Elderly (CANE) is a comprehensive, person-centred needs assessment tool that has been designed for use with older people. It is suitable for use in a variety of clinical and research settings. The CANE has a person-centred approach which allows views of the professional, user and carer to be recorded and compared. The instrument uses the principle that identifying a need means identifying a problem plus an appropriate intervention which will help or alleviate the need. Therefore, the CANE models clinical practice and relies on professional expertise for ratings to be completed accurately. Professionals using the CANE need to have had training and experience working with older people and an adequate knowledge of clinical interviewing and decision-making.
People are living longer, and the growth of the ageing population has led to an increase in demand for the use of health services. As life expectancy is extended, so the prevalence of long-term conditions and multi-morbidity increases. While healthy ageing is achievable, the distribution of health depends on social and economic determinants, and improvements in health outcomes are associated with higher socioeconomic status.1 Healthy ageing is linked to physical, mental, functional and social wellbeing but also depends on the role older people have in society and the reduction of age-discriminatory health inequalities.2 Currently, ageing is associated with increased use of health services, but older people are generally considered lower priority for treatment and receive poorer-quality care.3 Moreover, austerity measures over the last decade have led to a widening of social and economic inequalities, which have resulted in poorer health and increasing health inequality.4 Constraints in spending on health and social care raise questions as to how health and social services will use the resources available to meet the needs of the older populations they serve.
The Camberwell Assessment of Need for the Elderly (CANE) is an internationally accepted tool for assessing the needs of older people. Needs are assessed in twenty-four areas of life and cover a broad range of health, social and psychological domains. Two items that measure the needs of those who care for the older person are also included. The CANE is suitable for use in research, clinical practice and for evaluating health and social services provided to older people. It has been used for over twenty years in a range of settings, populations and countries. This book outlines the evidence for its use in effectively measuring the needs of older people across primary care, community, inpatient and care home settings. Both the full version CANE and short version (CANE-S) are included, along with a detailed manual and scoring guidance. The assessment forms are freely available to download from researchintorecovery.com/can and cambridge.org.
The Interdisciplinary Network for Dementia Using Current Technology, INDUCT, is a Marie Sklodowska Curie funded International Training Network that aims to develop a multi-disciplinary, inter-sectorial educational research framework for Europe to improve technology and care for people with dementia, and to provide the evidence to show how technology can improve the lives of people with dementia. Within INDUCT (2016-2020) 15 Early Stage Researchers worked on projects in the areas of Technology to support every day life; technology to promote meaningful activities; and health care technology.
Three transversal objectives were adopted by INDUCT: 1) To determine the practical, cognitive and social factors needed to make technology more useable for people with dementia; 2) To evaluate the effectiveness of specific contemporary technology; and 3) To trace facilitators and barriers for implementation of technology in dementia care.
The main recommendations resulting from the research projects are integrated in a web-based digital Best Practice Guidance on Human Interaction with Technology in Dementia which will be presented at the congress. The recommendations are meant to be helpful for different target groups, i.e. people with dementia, their formal and informal carers, policy makers, designers and researchers, who can easily select the for them relevant recommendations in the Best Practice Guidance by means of a selection tool. The main aim of the Best Practice Guidance is to improve the development, usage and implementation of technology for people with dementia in the three mentioned technology areas.
This Best Practice Guidance is the result of the intensive collaborative partnership of INDUCT with academic and non-academic partners as well as the involvement of representatives of the different target groups throughout the INDUCT project.
Acknowledgements: The research presented was carried out within the Marie Sklodowska Curie International Training Network (ITN) action, H2020-MSCA-ITN-2015, grant agreement number 676265.
The DESCANT (Dementia Early Stage Cognitive Aids New Trial) intervention provided a personalised care package to improve the cognitive abilities, function and well -being of people with early-stage dementia and their carers by providing a range of memory aids, with training and support for use. This presentation will explore findings from a goal attainment scaling exercise undertaken within a multi-site pragmatic randomised trial, part of a NIHR-funded research programme ‘Effective Home Support in Dementia Care: Components, Impacts and Costs of Tertiary Prevention.’
The aim was to describe the Goal Attainment Scaling (GAS) approach developed; investigate the types of goals identified by people with dementia and their carers and subsequent attainment; and explore the role of Dementia Support Practitioners (DSPs) in the process. This GAS exercise was designed by researchers, a clinical psychologist, a clinician and a DSP. Goal setting and attainment were conducted with the person with dementia and their carer and recorded by DSPs. Data were obtained from 117 intervention records and semi-structured interviews with five DSPs delivering the intervention across seven NHS Trusts in England and Wales. The GAS exercise was conducted as planned with goals and extent of involvement in the exercise tailored to individual participants and engagement was high. Demographic characteristics from the trial baseline dataset were analysed. Measures were created from intervention records to permit quantification and descriptive analysis. Interviews were professionally transcribed and subject to thematic analysis to identify salient themes.
A total of 293 goals were identified across the 117 participants. From these 17 goal types were distinguished across six domains: self -care; household tasks; daily occupation; orientation; communication; and well-being and safety. A measure of goal attainment appropriate to both the client group and a modest intervention was obtained. On average participants had evidenced some improvement regarding goals set. Qualitative findings suggested overall DSPs were positive about their experience of goal setting. Although several challenges were identified, if these were overcome, measuring goal attainment was generally viewed as straightforward. GAS can be used in the context of a psychosocial intervention for people with early-stage dementia to identify and measure attainment of personalised care goals.
Post-diagnostic psychosocial interventions could play an important role in supporting people with mild dementia remain independent. The Promoting Independence in Dementia (PRIDE) intervention was developed to address this.
The mixed methods non-randomized, pre-post feasibility study occurred across England. Facilitators were recruited from the voluntary sector and memory services. Participants and their supporters took part in the three-session intervention. Outcome measures were collected at baseline and follow-up. To evaluate acceptability, focus groups and interviews were conducted with a subsample of participants and facilitators.
Contextual challenges to delivery including national research governance changes, affected recruitment of study sites. Thirty-four dyads consented, with 14 facilitators providing the intervention. Dyads took part in at least two sessions (79%), and 73% in all three. Outcome measures were completed by 79% without difficulty, with minimal missing data. No significant changes were found on pre and post assessments. Post hoc analysis found moderate effect size improvements for self-management (SMAS instrument) in people with dementia (d = 0.41) and quality of life (EQ5D measure) in carers (d = 0.40). Qualitative data indicated that dyads found PRIDE acceptable, as did intervention facilitators.
The three-session intervention was well accepted by participant-dyads and intervention facilitators. A randomized controlled trial of PRIDE would need to carefully consider recruitment potential across geographically varied settings and site stratification according to knowledge of contextual factors, such as the diversity of post-diagnostic services across the country. Letting sites themselves be responsible for identifying suitable intervention facilitators was successful. The self-report measures showed potential to be included in the main trial.
In order to evaluate interventions promoting social health in people with dementia it is essential to have reliable and valid measures. The present review aims to provide an overview of available instruments for the assessment of two domains of social health in community-dwelling people with mild dementia, i.e., the ability to manage life with some degree of independence (self-management) and participation in social activities.
An electronic search was conducted in the following databases: PubMed, CINAHL, and PsycINFO. Characteristics of the instruments, feasibility and psychometric properties of the instruments included are reported on.
We identified eight instruments measuring aspects of self-management and three instruments measuring social participation. Validity and reliability of self-management instruments varied between moderate and good. Little information was found on the psychometric properties of the instruments for social participation. In general, feasibility and responsiveness data regarding application in community-dwelling people with dementia were scarce for both types of instruments.
Future research into assessment tools for social health should focus on the development of instruments for self-management that also cover the areas of coping with and adapting to the emotional consequences of the disease; instruments for social participation covering the involvement in social interactions that are experienced as meaningful by the person; and on the psychometric properties and responsiveness of instruments. More attention should also be given to the feasibility (ease of use) of these instruments for people with mild dementia, professionals, and researchers.
Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.
A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices.
The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia.
Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.
Sense of competence defines a caregiver’s feeling of being capable to manage the caregiving task and is an important clinical concept in the caregiving literature. The aim of this review was to identify the factors, both positive and negative, associated with a caregiver’s perception of their sense of competence.
A systematic review of the literature was conducted, retrieving both quantitative and qualitative papers from databases PsycINFO, CINAHL, EMBASE, and Medline. A quality assessment was conducted using the STROBE and CASP checklists, and the quality rating informed the inclusion of papers ensuring the evidence was robust. Narrative synthesis was employed to synthesize the findings and to generate an updated conceptual model of sense of competence.
Seventeen papers were included in the review, all of which were moderate to high quality. These included 13 quantitative, three mixed-methods and one qualitative study. Factors associated with sense of competence included: behavioral and psychological symptoms of dementia (BPSD), caregiver depression, gratitude, and the ability to find meaning in caregiving.
The results of this review demonstrate that both positive and negative aspects of caring are associated with caregiver sense of competence. Positive and negative aspects of caregiving act in tandem to influence caregiver perception of their competence. The proposed model of sense of competence aims to guide future research and clinical interventions aimed at improving this domain but requires further testing, as due to the observational nature of the include papers, the direction of causality could not be inferred.
Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice.
A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties.
Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory.
There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.
There are concerns about the quality of care that people with dementia receive in the general hospital. Staff report a lack of confidence and inadequate training in dementia care.
A train-the-trainer model was implemented across eight acute hospital trusts in London via a large academic health and science network. Impact was evaluated using mixed methods. Data were collected at (a) individual level: “Sense of Competence in Dementia Care” (SCID), (b) ward level: Person Interaction and Environment (PIE) observations, (c) organization level: use of specific tools, i.e. “This Is Me,” (d) systems level: numbers and types of staff trained per trust. Results were analyzed with descriptive statistics and paired t-test with thematic framework analysis for PIE observations.
The number of staff trained per trust ranged from 67 to 650 (total 2,020). A total of 1,688 (85%) baseline questionnaires and 456 (27%) three month follow-up questionnaires were completed. Mean SCID score was 43.2 at baseline and 50.7 at follow-up (paired t-test, p < 0.001). All sub-scales showed a small increase in competence, the largest being for “building relationships.” Organizational level data suggested increased use of carer's passport, “This Is Me” documentation, dementia information leaflets, delirium screening scales, and pathways. PIE observations demonstrated improved staff–patient interactions but little change in hospital environments.
There was a significant improvement in staffs’ sense of competence in dementia care and the quality of interactions with patients. More hospitals adopted person-centered tools and pathways. Work is required to investigate if these changes improve hospital outcomes for people with dementia.