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Steyaert, Jan; Deckers, Kay; Smits, Carolien; Fox, Chris; Thyrian, René; Jeon, Yun-Hee; Vernooij-Dassen, Myrra; Köhler, Sebastian; ,
doi: 10.1080/13607863.2020.1783514pmid: 32590910
Abstract Many publications on dementia start by outlining the current estimated number of people with dementia and how that figure is going to double (in Western societies) or even quadruple (in developing countries) in the coming decades as a result of increasing life expectancy (in itself a good development). Dementia is therefore a huge challenge to society, both in terms of providing good care for persons living with dementia and their family caregivers, as well as in searching for curative solutions. Both these challenges are complex. Fortunately, recent research indicates primary prevention to be a promising additional strategy in the dementia quest. Now that epidemiological research robustly shows the link between lifestyle and risk of dementia, new challenges emerge, such as how to increase public awareness about brain health, how to develop and implement strategies to promote brain healthy lifestyles and how to avoid increasing health inequalities. Interdem, the pan-European network of researchers on Psychosocial Interventions in Dementia, strongly welcomes this new strategy and consequently established a taskforce on primary prevention. In this position paper, we outline what we see as main building blocks of primary prevention of dementia.
Parial, Laurence Lloyd; Lam, Simon Ching; Ho, Janice Yuen Shan; Suen, Lorna K. P.; Leung, Angela Yee Man
doi: 10.1080/13607863.2020.1786801pmid: 32633131
Abstract Objectives This systematic review examined whether the general public are aware of the influence of modifiable cardiovascular risk factors (CVRFs) on dementia. Methods Following PRISMA guidelines, five electronic databases (PubMed, Medline, CINAHL, ProQuest, and Scopus) were searched for studies published from 2009–2019, using the key terms “knowledge,” “modifiable cardiovascular risk factors,” and “dementia.” Standardized critical appraisal instruments were used to evaluate the quality of the studies. Results Of the 1,533 articles that were screened, 26 were included in this review. Modifiable CVRFs of dementia included behavioral factors (physical inactivity, poor dietary practices, high alcohol consumption, and heavy smoking) and medical conditions (hypertension, diabetes mellitus, hypercholesterolemia, and obesity). Although the association between CVRFs and dementia was identified (pooled prevalence is 24–50%), overall knowledge about this relationship in the general public was low. Sociodemographic variables, such as higher education, better economic status, and prior contact with a person with dementia, positively influenced dementia risk knowledge. Ethnic minorities showed good awareness of dementia risk from cardiovascular-related conditions. Conclusion Despite dementia is considered as a public health priority by World Health Organization, knowledge of the modifiable CVRFs and dementia is low in the general population. Public health policymakers should develop appropriate educational programs and interventions to equip the communities and vulnerable groups with this understanding so that they can be prepared to reduce dementia risk.
Surr, Claire A.; Holloway, Ivana; Walwyn, Rebecca E. A.; Griffiths, Alys W.; Meads, David; Martin, Adam; Kelley, Rachael; Ballard, Clive; Fossey, Jane; Burnley, Natasha; Chenoweth, Lynn; Creese, Byron; Downs, Murna; Garrod, Lucy; Graham, Elizabeth H.; Lilley-Kelly, Amanda; McDermid, Joanne; McLellan, Vicki; Millard, Holly;
Nielsen, T. Rune; Nielsen, Dorthe S.; Waldemar, Gunhild
doi: 10.1080/13607863.2020.1787336pmid: 32619352
Abstract Objectives To explore barriers in access to dementia care in Turkish, Pakistani and Arabic speaking minority ethnic groups in Denmark. Method Semi-structured qualitative individual- and group interviews with minority ethnic family carers, primary care dementia coordinators, staff in elderly daycare, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework. Results A total of 21 individual- and 6 group interviews were conducted, including a total of 35 participants. On the service user side, barriers in access to dementia care were related to lacking language proficiency and strong cultural norms, including familial responsibility for the care of older family members and stigma associated with mental illness and dementia. On the care provider side, the available formal services were rarely tailored to the specific needs of minority ethnic service users and were often considered inadequate or unacceptable. Conclusion Care practices and perceived consequences of dementia in minority ethnic communities were heavily influenced by cultural factors leading to a number of persisting barriers to accessing dementia care services. There is a simultaneous need to raise awareness about dementia and the existence of dementia care services in minority ethnic groups, to reduce stigma, and to develop culturally appropriate dementia care options.
Evans, N.; Boyd, H.; Harris, N.; Noonan, K.; Ingram, T.; Jarvis, A.; Ridgers, J.; Cheston, R.
doi: 10.1080/13607863.2020.1745145pmid: 32223428
Abstract Objectives People who are living with dementia typically experience difficulties in completing multi-step, everyday tasks. However, digital technology such as touchscreen tablets provide a means of delivering concise personalised prompts that combine audio, text and pictures. This study was one component of a broader, mixed methods study that tested how an application (app) –based prompter running on a touchscreen tablet computer could support everyday activities in individuals with mild to moderate dementia. In this study we set out to understand the experiences of people living with dementia and their primary carer in using the prompter over a four-week period. Method We collected qualitative data using semi-structured interviews from 26 dyads, composed of a person living with dementia and their carer. Dyads were interviewed at the start and end of this period. Transcripts were then analysed using thematic analysis. Results The study identified three overarching themes related to: participants’ attitudes towards the technology; their judgements about how useful the prompter would be; and the emotional impact of using it. Conclusion Consistent with the Technology Acceptance Model, carers and participants were influenced by their approaches to technology and determined the usefulness of the prompter according to whether it worked for them and fitted into their routines. In addition, participants’ decisions about using the prompter were also determined by the extent to which doing so would impact on their self-identity.
Veldwijk-Rouwenhorst, Annelies E.; Zuidema, Sytse U.; Smalbrugge, Martin; Bor, Hans; Wetzels, Roland; Gerritsen, Debby L.; Koopmans, Raymond T. C. M.
doi: 10.1080/13607863.2020.1786799pmid: 32602746
Abstract Objectives We investigated the 2-week prevalence and correlates of very frequent physical aggression (PA) and vocalizations in nursing home (NH)-residents with dementia. Method/Design This cross-sectional study used combined data of 2074 NH-residents from four studies, collected from 119 dementia special care units in 26 Dutch NH. Very frequent PA was defined as scoring 6 or 7 on the items ‘hitting’, pushing’, ‘biting’ and ‘kicking’ of the Cohen Mansfield Agitation Inventory; very frequent vocalizations as scoring 6 or 7 on ‘screaming’ and ‘making strange noises’. We compared NH-residents with very frequent PA or vocalizations with residents with less frequent PA or vocalizations, assessing correlates using univariate and multivariate multilevel logistic regression analyses. Results We found a 2-week prevalence of 2.2% (95% confidence interval (CI): 1.63–2.89) of very frequent PA and 11.5% of very frequent vocalizations (95% CI: 10.23–12.98). Very frequent PA was only associated with apathy (odds ratio (OR)=1.93, 95% CI: 1.04–3.61). Correlates of very frequent vocalizations were age (OR = 0.97, 95% CI: 0.951–0.998), dementia severity (overall p-value 0.020), antipsychotic drug use (OR = 1.56, 95% CI: 1.08–2.26), antiepileptic drug use (OR = 2.75, 95% CI: 1.34–5.68) and euphoria (OR = 2.01, 95% CI: 1.22–3.31). Conclusion Characteristics of NH-residents with very frequent PA or very frequent vocalizations differ from those of NH-residents with less frequent PA or vocalizations. Frontal lobe damage, boredom, pain and/or external factors may explain several of the found associations, but further research is necessary. Our findings may contribute to better care for these residents and thereby to improving their quality of life.
Campbell, Paul; Rathod-Mistry, Trishna; Marshall, Michelle; Bailey, James; Chew-Graham, Carolyn A.; Croft, Peter; Frisher, Martin; Hayward, Richard; Negi, Rashi; Singh, Swaran; Tantalo-Baker, Shula; Tarafdar, Suhail; Babatunde, Opeyemi O.; Robinson, Louise; Sumathipala, Athula;
Rapaport, Penny; Burton, Alexandra; Palomo, Marina; Griffiths, Jessica; Kelleher, Daniel; Leverton, Monica; Vickerstaff, Victoria; Barber, Julie; Bird, Megan; Budgett, Jessica; Birch, Jodie; Rockwood, Kenneth; Downs, Murna; Lord, Kathryn;
Showing 1 to 10 of 23 Articles
Abstract Objectives Concentrating post-diagnostic dementia care in primary care may lead to better and more cost-effective care closer to home. We aimed to assess which intervention components and contextual factors may contribute to the successful delivery and implementation of primary care-led post-diagnostic dementia care. Methods Mixed-methods systematic review. We searched five databases (inception-March 2019) with reference list screening and citation tracking. We included studies evaluating post-diagnostic dementia care interventions where primary care had a significant role in dementia care, which assessed one or more implementation elements (acceptability, feasibility, adoption, sustainability, reach, costs, appropriateness or fidelity). Two authors independently critically appraised studies. Results Out of 4528 unique references, we screened 380 full texts and included 49 evaluations of services collecting implementation process data. Most services had high acceptability ratings. The most acceptable components were information provision, social and emotional support and links to community organisations. Feasibility was chiefly influenced by provider engagement and leadership, building dementia care capacity, sufficient resources/funding and collaboration. Care quality was maximised through adding capacity from a dementia-specific health professional. On the basis of limited data, costs for various primary care-led models did not substantially differ from each other. Conclusion A range of primary care-led dementia care models appear feasible and acceptable. Future services should: add dementia-focussed health professionals into primary care, develop primary care leadership and provide sufficient funding and collaboration opportunities. Information, community service links and social and ongoing support should be part of services. Further exploration of service reach and formalised fidelity assessment are needed.
doi: 10.1080/13607863.2020.1745144pmid: 32279541
Abstract Objectives Agitation is common and problematic in care home residents with dementia. This study investigated the (cost)effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation in this population. Method Pragmatic, cluster randomised controlled trial with cost-effectiveness analysis in 50 care homes, follow-up at 6 and 16 months and stratified randomisation to intervention (n = 31) and control (n = 19). Residents with dementia were recruited at baseline (n = 726) and 16 months (n = 261). Clusters were not blinded to allocation. Three DCM cycles were scheduled, delivered by two trained staff per home. Cycle one was supported by an external DCM expert. Agitation (Cohen-Mansfield Agitation Inventory (CMAI)) at 16 months was the primary outcome. Results DCM was not superior to control on any outcomes (cross-sectional sample n = 675: 287 control, 388 intervention). The adjusted mean CMAI score difference was –2.11 points (95% CI –4.66 to 0.44, p = 0.104, adjusted ICC control = 0, intervention 0.001). Sensitivity analyses supported the primary analysis. Incremental cost per unit improvement in CMAI and QALYs (intervention vs control) on closed-cohort baseline recruited sample (n = 726, 418 intervention, 308 control) was £289 and £60,627 respectively. Loss to follow-up at 16 months in the original cohort was 312/726 (43·0%) mainly (87·2%) due to deaths. Intervention dose was low with only a quarter of homes completing more than one DCM cycle. Conclusion No benefits of DCM were evidenced. Low intervention dose indicates standard care homes may be insufficiently resourced to implement DCM. Alternative models of implementation, or other approaches to reducing agitation should be considered.
doi: 10.1080/13607863.2020.1783511pmid: 32578454
Abstract Objectives Identifying routinely recorded markers of poor health in patients with dementia may help treatment decisions and evaluation of earlier outcomes in research. Our objective was to determine whether a set of credible markers of dementia-related health could be identified from primary care electronic health records (EHR). Methods The study consisted of (i) rapid review of potential measures of dementia-related health used in EHR studies; (ii) consensus exercise to assess feasibility of identifying these markers in UK primary care EHR; (iii) development of UK EHR code lists for markers; (iv) analysis of a regional primary care EHR database to determine further potential markers; (v) consensus exercise to finalise markers and pool into higher domains; (vi) determination of 12-month prevalence of domains in EHR of 2328 patients with dementia compared to matched patients without dementia. Results Sixty-three markers were identified and mapped to 13 domains: Care; Home Pressures; Severe Neuropsychiatric; Neuropsychiatric; Cognitive Function; Daily Functioning; Safety; Comorbidity; Symptoms; Diet/Nutrition; Imaging; Increased Multimorbidity; Change in Dementia Drug. Comorbidity was the most prevalent recorded domain in dementia (69%). Home Pressures were the least prevalent domain (1%). Ten domains had a statistically significant higher prevalence in dementia patients, one (Comorbidity) was higher in non-dementia patients, and two (Home Pressures, Diet/Nutrition) showed no association with dementia. Conclusions EHR captures important markers of dementia-related health. Further research should assess if they indicate dementia progression. These markers could provide the basis for identifying individuals at risk of faster progression and outcome measures for use in research.
doi: 10.1080/13607863.2020.1845299pmid: 33222498
Abstract Objectives To examine the feasibility and acceptability of NIDUS-Family, a 6–8 session manualised, individually tailored, modular intervention supporting independence at home for people with dementia; and explore participants’ and facilitators’ experiences of the intervention. Method In this single group multi-site feasibility study, trained, supervised non-clinically qualified graduates (facilitators) delivered NIDUS-Family to family carer and people living with dementia dyads. We recruited participants from GP practices and memory services in London and Bradford. We completed quantitative outcomes pre- and post-intervention; and conducted qualitative interviews with participants and facilitators. Our pre-specified main outcomes were proportion of potential participants approached who agreed to participate, intervention adherence and acceptability to family carers, and facilitator fidelity to the manual. Results We recruited 16 dyads (57% of those approached); 12 (75%) completed the intervention. Of 12 participants rating intervention acceptability, 9 (75%) agreed or strongly agreed that it had helped; 2 (18%) neither agreed nor disagreed and 1 (8%) disagreed. Mean facilitator fidelity was high (81.5%). Dyads set on average 3.9 goals; these most commonly related to getting out and about and increasing activity/hobby participation (n = 10); carer wellbeing (n = 6), managing physical complaints (n = 6); meal preparation/cooking (n = 5); and reducing irritability, frustration or aggression (n = 5). Almost all secondary outcomes changed in a direction indicating improvement. In our qualitative analysis we identified three overarching themes; relationships facilitate change, goal-focused versus manualised approach and balancing the needs of carers and people with dementia. Conclusion NIDUS-Family was feasible and acceptable to participants. Following refinements, testing in a pragmatic trial is underway.