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Dementia Current Awareness Bulletin - February 2021 - DOCUMENT TITLE GOES HERE
Dementia
Current Awareness Bulletin
February 2021
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Title: Insights to Identifying and Managing Pain in Persons With Dementia in Long-
Term Care: A Mixed Methods Study Comparing the Abbey Pain Scale and Pain
Assessment in Advanced Dementia Scale

Citation: Journal of Gerontological Nursing; Feb 2021; vol. 47 (no. 2); p. 21
Author(s): Parkman, Suzanne; Mastel-Smith, Beth; McGuire, Anthony; Duke, Gloria

Abstract: Pain is usually identified by specific behaviors driven by the need for relief;
however, persons with dementia present a unique challenge for nurses in assessing and
managing pain. The aim of this mixed methods study was to explore the relationship
between two observational pain scales, expressed need-driven behaviors, and likelihood of
medication administration for persons with dementia. The qualitative strand examined
nurses' perceptions regarding facilitators and barriers to pain scale use. Quantitative data
analysis indicated the Abbey Pain Scale was significantly correlated with behaviors (r[26] =
0.41, p < 0.05) and approached significance with medication administration (r[26] = 0.35, p =
0.067). Qualitative analysis identified three core themes: (a) Challenges in Assessing
Persons With Dementia for Pain; (b) Facilitators and Barriers to Pain Management; and (c)
Difficulty Caring for Persons With Dementia. Clinical implications suggest the need for a
systematic, consistent method of observing pain-related behaviors in persons with dementia.

Title: COVID 19 and dementia: experience from six European countries.

Citation: International journal of geriatric psychiatry; Jan 2021
Author(s): Burns, Alistair; Lobo, Antonio; Olde Rikkert, Marcel; Robert, Philippe; Sartorius,
Norman; Semrau, Maya; Stoppe, Gabriela

Abstract: The effects of Covid-19 have been well documented across the world with an
appreciation that older people and in particular those with dementia have been
disproportionately and negatively affected by the pandemic. This is both in terms of their
health outcomes (mortality and morbidity), care decisions made by health systems and the
longer-term effects such as neurological damage. The International Dementia Alliance
(IDEAL) is a group of dementia specialists from six European countries and this paper is a
summary of our experience of the effects of COVID-19 on our populations. Experience from
England, France, Germany, the Netherlands, Spain and Switzerland highlight the differential
response from health and social care systems and the measures taken to maximise support
for older people and those with dementia. The common themes include recognition of the
atypical presentation of COVID-19 in older people (and those with dementia)the need to pay
particular attention to the care of people with dementia in care homes; the recognition of the
toll that isolation can bring on older people and the complexity of the response by health and
social services to minimise the negative impact of the pandemic. Potential new ways of
working identified during the pandemic could serve as a positive legacy from the crisis.

Title: Using Twitter to understand the COVID-19 experiences of people living with
dementia.

Citation: Journal of medical Internet research; Jan 2021
Author(s): Bacsu, Juanita Dawne; O'Connell, Megan E; Cammer, Allison; Azizi, Mahsa;
Grewal, Karl; Poole, Lisa; Green, Shoshana; Sivananthan, Saskia; Spiteri, Raymond J
Objectives: The COVID-19 pandemic is affecting people with dementia in numerous ways.
Nevertheless, there is a paucity of research on the COVID-19 impact on people with
dementia and their care partners. Using Twitter, the purpose of this study was to understand
the experiences of COVID-19 of people living with dementia and their care partners.
Methods: We collected tweets on COVID-19 and dementia using the GetOldTweets
application in Python from February 15 to September 7, 2020. Thematic analysis was used
to analyze the tweets.
Results: From the 5,063 tweets analyzed with line by line coding, we identified four main
themes including: i) separation and loss; ii) COVID confusion, despair, and abandonment; iii)
stress and exhaustion exacerbation; and iv) unpaid sacrifices by formal care providers.
Conclusions: There is an imminent need for governments to rethink using a one-size-fits-all
response to COVID-19 policy and use a collaborative approach to support people with
dementia. Collaboration and more evidence-informed research are essential to reducing
COVID-19 mortality and improving the quality of lives for people with dementia and their
care partners.

Title: Impact of dementia education and training on health and social care staff
knowledge, attitudes and confidence: a cross-sectional study.

Citation: BMJ open; Jan 2021; vol. 11 (no. 1); p. e039939
Author(s): Parveen, Sahdia; Smith, Sarah Jane; Sass, Cara; Oyebode, Jan R; Capstick,
Andrea; Dennison, Alison; Surr, Claire A

Objectives: The aim of this study was to establish the impact of dementia education and
training on the knowledge, attitudes and confidence of health and social care staff. The
study also aimed to identify the most effective features (content and pedagogical) of
dementia education and training.
Design: Cross-sectional survey study. Data collection occurred in 2017.SETTINGSHealth
and social care staff in the UK including acute care, mental health community care trusts,
primary care and care homes.
Participants: All health and social care staff who had completed dementia education and
training meeting the minimal standards as set by Health Education England, within the past
5 years were invited to participate in an online survey. A total of 668 health and social care
staff provided informed consent and completed an online survey, and responses from 553
participants were included in this study. The majority of the respondents were of white British
ethnicity (94.4%) and identified as women (88.4%).
Outcomes: Knowledge, attitude and confidence of health and social care staff.
Results: Hierarchical multiple regression analysis was conducted. Staff characteristics,
education and training content variables and pedagogical factors were found to account for
29% of variance in staff confidence (F=4.13, p
Title: "EduKation demenz® Nursing" in the acute hospital setting : Evaluation of
a dementia training program: a pilot study.

Citation: Zeitschrift fur Gerontologie und Geriatrie; Jan 2021
Author(s): Gehr, Thomas Johann; Sieber, Cornel Christian; Freiberger, Ellen; Engel, Sabine
Alexandra

Background: An increasing number of people with dementia (PwD) are being hospitalized
due to acute conditions. The surrounding conditions and procedures in acute hospitals are
not oriented to the special needs of this vulnerable patient group. The behavior of PwD
poses particular challenges and burdens for nursing staff.
Objective: The aim of this pilot study was to evaluate the effectiveness of a 2-day dementia
training program with a self-reflection component compared to a standard 1.5-h training of
nursing staff caring for PwD in acute hospitals.
Methods: A nonrandomized pretest-posttest study with a control group was conducted in
three German acute hospitals. Through a questionnaire, nursing staff caring for PwD were
examined for potential changes in attitude, strain and confidence levels. The intervention
group (n = 32) received a 2-day training program, "EduKation demenz® Nursing", the control
group (n = 36) participated in a short,1.5-h dementia training.
Results: Compared to the control group, the intervention group demonstrated statistically
significant improvement in perceived strain (p = 0.007) and in confidence in caring for PwD
(p < 0.001). There were positive but not significant changes in attitude (p = 0.176).
Conclusion: "EduKation demenz® Nursing", a 2-day training program with a self-reflection
component, could provide more effective support for nursing staff in acute hospitals caring
for PwD than a 1.5-h training. Results indicate, however, that general conditions in acute
hospitals should be changed to allow nursing staff to apply the knowledge gained.

Title: Multicenter randomized controlled trial of the effects of individual reminiscence
therapy on cognition, depression and quality of life: Analysis of a sample of older
adults with Alzheimer's disease and vascular dementia.

Citation: The Clinical neuropsychologist; Jan 2021 ; p. 1-22

Objective: To determine the effectiveness of a 13-week individual reminiscence therapy
(RT) intervention on cognition, memory, executive function, mood, and quality of life of
people with Alzheimer's disease and vascular dementia.
Method: Non-protocolized analysis using data from a larger multicenter, single-blind,
randomized, parallel two-arm RCT of RT for people with neurocognitive disorders. A sample
of 148 people with probable Alzheimer's disease or vascular dementia attending 23
Portuguese institutions providing care and support services for older adults were selected.
Intervention group (n = 74) received 26 individual RT sessions, twice a week for 13 weeks.
Control group (n = 74) maintained their treatment as usual. Outcomes were global cognitive
function (MMSE), memory (MAT), executive function (FAB), mood (GDS-15), and self-
reported quality of life (QoL-AD). All participants were assessed at baseline (T0) and
15 weeks later (T1).
Results: The results showed a significant effect of the intervention on global cognition
(Group X Time interaction F(1, 128) = 10.542, p = .001, ηp 2 = .076), memory (F(1,128) =
9.881, p = .002, ηp 2 = .072), and quality of life (F(1,128) = 0.181, p = .671, ηp 2 = .001),
with medium effect sizes. A small effect on executive function (F(1,127) = 11.118, p = .001,

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ηp 2 = .080) was also found. No effects were found on depressive symptoms (F(1,128) =
0.181, p = .671, ηp 2 = .001).
Conclusion: Individual RT may have beneficial effects on cognition and quality of life of
people with Alzheimer's disease or vascular dementia.

Title: Caregiver Prediction of Driving Fitness in Older Adults with Dementia.

Citation: Clinical gerontologist; Jan 2021 ; p. 1-8
Author(s): Barco, Peggy P; Wallendorf, Michael; Blenden, Gabrielle; Rutkoski, Kathleen;
Dolan, Kathleen; Carr, David

Objectives: To determine whether caregiver opinion of fitness to drive and the level of
assistance needed for functional activities are useful in determining the need for a
Comprehensive Driving Evaluation.
Methods: This study examined a sample (N = 179) of drivers with dementia. Caregivers
completed a questionnaire that included caregiver opinion of driving fitness and the
Functional Assessment Questionnaire (FAQ). A univariate simple logistic regression model
was used to examine the relationship of road test failure with caregiver opinion of driving
fitness and FAQ scores. From the significant predictive variables from the univariate test,
multiple logictic regression models were used to examine possible combination of variables
as predictors of road test failure.
Results: The combination of caregiver opinion of driving fitness and the FAQ sub-item for
memory were found to have modest ability in predicting failure on a standardized on-road
driving assessment (AUC 0.727).
Conclusions: Caregiver opinion of driving fitness and most individual higher order activities
of daily living were found to be independent predictors of failure on a standardized road test.
Clinical Implications: Caregiver opinion of driving fitness and ratings of functional activities
may be useful for families and clinicians in considering whether an adult with dementia
should be more carefully assessed for fitness to drive.

Title: COVID-19-related social support service closures and mental well-being in older
adults and those affected by dementia: a UK longitudinal survey.

Citation: BMJ open; Jan 2021; vol. 11 (no. 1); p. e045889
Author(s): Giebel, Clarissa; Pulford, Daniel; Cooper, Claudia; Lord, Kathryn; Shenton,
Justine; Cannon, Jacqueline; Shaw, Lisa; Tetlow, Hilary; Limbert, Stan; Callaghan, Steve;
Whittington, Rosie; Rogers, Carol; Komuravelli, Aravind; Rajagopal, Manoj; Eley, Ruth;
Downs, Murna; Reilly, Siobhan; Ward, Kym; Gaughan, Anna; Butchard, Sarah; Beresford,
Jules; Watkins, Caroline; Bennett, Kate; Gabbay, Mark

Objectives: The COVID-19 pandemic has had a major impact on delivery of social support
services. This might be expected to particularly affect older adults and people living with
dementia (PLWD), and to reduce their well-being. This study aims to explore how social
support service use by older adults, carers and PLWD, and their mental well-being changed
over the first 3 months since the pandemic outbreak.
Methods: Unpaid dementia carers, PLWD and older adults took part in a longitudinal online
or telephone survey collected between April and May 2020, and at two subsequent
timepoints 6 and 12 weeks after baseline. Participants were asked about their social support

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service usage in a typical week prior to the pandemic (at baseline), and in the past week at
each of the three timepoints. They also completed measures of levels of depression, anxiety
and mental well-being.
Results: 377 participants had complete data at all three timepoints. Social support service
usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then
increase again by T3. The access to paid care was least affected by COVID-19. Cases of
anxiety dropped significantly across the study period, while cases of depression rose. Well-
being increased significantly for older adults and PLWD from T1 to T3.
Conclusions: Access to social support services has been significantly affected by the
pandemic, which is starting to recover slowly. With mental well-being differently affected
across groups, support needs to be put in place to maintain better well-being across those
vulnerable groups during the ongoing pandemic.

Title: The impact of lockdown during SARS-CoV-2 outbreak on behavioral and
psychological symptoms of dementia.

Citation: Neurological sciences : official journal of the Italian Neurological Society and of the
Italian Society of Clinical Neurophysiology; Jan 2021
Author(s): Manini, Arianna; Brambilla, Michela; Maggiore, Laura; Pomati, Simone; Pantoni,
Leonardo

Objective: During Covid-19 pandemic, the Italian government adopted restrictive limitations
and declared a national lockdown on March 9, which lasted until May 4 and produced
dramatic consequences on people's lives. The aim of our study was to assess the impact of
prolonged lockdown on behavioral and psychological symptoms of dementia (BPSD).
Methods: Between April 30 and June 8, 2020, we interviewed with a telephone-based
questionnaire the caregivers of the community-dwelling patients with dementia who had their
follow-up visit scheduled from March 9 to May 15 and cancelled due to lockdown. Among
the information collected, patients' BPSDs were assessed by the Neuropsychiatric Inventory
(NPI). Non-parametric tests to compare differences between NPI scores over time and
logistic regression models to explore the impact of different factors on BPSD worsening
were performed.
Results: A total of 109 visits were cancelled and 94/109 caregivers completed the interview.
Apathy, irritability, agitation and aggression, and depression were the most common
neuropsychiatric symptoms experienced by patients both at baseline and during Covid-19
pandemic. Changes in total NPI and caregiver distress scores between baseline and during
lockdown, although statistically significant, were overall modest. The logistic regression
model failed to determine predictors of BPSD worsening during lockdown.
Conclusion: This is one of the first studies to investigate the presence of BPSD during
SARS-CoV-2 outbreak and related nationwide lockdown, showing only slight, likely not
clinically relevant, differences in BPSD burden, concerning mostly agitation and aggression,
anxiety, apathy and indifference, and irritability.

Title: Finding a balance in family caregiving for people with dementia: A correlational
longitudinal study.

Citation: Journal of advanced nursing; Jan 2021
Author(s): Liu, Hsin-Yun; Hsu, Wen-Chuin; Shyu, Yea-Ing L; Wang, Yu-Nu; Huang, Tzu-
Hsin; Lin, Yueh-E; Huang, Chun-Hsia

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Objective: The "Finding a Balance Point" framework was used to explore the caregiving
process over time for family caregivers of people with dementia in Taiwan. This study aimed
to: (a) identify Taiwanese caregivers' different balance trajectories; (b) explore predictors of
trajectory group membership; and (c) examine associations of different balance trajectories
with caregiving outcomes.
Design: A correlational longitudinal design was used.
Methods: Data were collected from 200 family caregivers' self-completed questionnaires
and they were followed over 2 years (June 2015-May 2017). Discrete balance trajectories
were identified by group-based trajectory modelling. Predictors of trajectory group
membership were identified from potential predictors of caregiving characteristics and
caregiving factors using multivariate logistic regression. Associations of trajectory groups
with caregiving outcomes (depressive symptoms and health-related quality of life) were
explored using the generalized estimating equation.
Results: Balance trajectories best fit a two-group trajectory model (poor and good).
Caregivers with a poor sense of balance between competing needs were more likely to have
more depressive symptoms (b = 11.71, 95% CI [9.04, 14.38], p < .001), worse physical
health (b = -6.22, 95% CI [-8.71, -3.74], p < .001), and worse mental health (b = -11.1, 95%
CI [-13.58, -8.63], p < .001) than caregivers with a good sense of balance. Caregivers
experiencing lower role strain (b = -1.45, SE = 0.48, p = .003) or higher predictability
(b = 2.83, SE = 0.76, p < .001) were more likely to belong to the good-balance group.
Conclusions: Caregivers with poor balance between competing needs are more likely to
have worse caregiving outcomes. Role strain and predictability significantly predicted
balance trajectory groups. Family caregivers with lower caregiving task difficulty and/or
better knowledge of the care receiver were more likely to be in the good balance trajectory
group.
Impact: Our findings support the framework, "Finding a Balance Point," and clarify the family
caregiving process for people with dementia. This framework could be used to tailor
interventions for home care nurses to improve family caregivers' caregiving outcomes.

Title: Title: Differentiating dementia with Lewy bodies from Alzheimer's disease and
Parkinson's disease dementia: an update on imaging modalities.

Citation: Journal of neurology; Jan 2021
Author(s): Orad, Rotem Iris; Shiner, Tamara

Abstract: Dementia with Lewy bodies is the second most common cause of
neurodegenerative dementia after Alzheimer's disease. Dementia with Lewy bodies can
provide a diagnostic challenge due to the frequent overlap of clinical signs with other
neurodegenerative conditions, namely Parkinson's disease dementia, and Alzheimer's
disease. Part of this clinical overlap is due to the neuropathological overlap. Dementia with
Lewy bodies is characterized by the accumulation of aggregated α-synuclein protein in Lewy
bodies, similar to Parkinson's disease and Parkinson's disease dementia. However, it is also
frequently accompanied by aggregation of amyloid-beta and tau, the pathological hallmarks
of Alzheimer's disease. Neuroimaging is central to the diagnostic process. This review is an
overview of both established and evolving imaging methods that can improve diagnostic
accuracy and improve management of this disorder.

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Title: Cognitive and social activities and long-term dementia risk: the prospective UK
Million Women Study.

Citation: The Lancet. Public health; Feb 2021; vol. 6 (no. 2); p. e116
Author(s): Floud, Sarah; Balkwill, Angela; Sweetland, Siân; Brown, Anna; Reus, Elsa
Mauricio; Hofman, Albert; Blacker, Deborah; Kivimaki, Mika; Green, Jane; Peto, Richard;
Reeves, Gillian K; Beral, Valerie

Background: Although dementia is associated with non-participation in cognitive and social
activities, this association might merely reflect the consequences of dementia, rather than
any direct effect of non-participation on the subsequent incidence of dementia. Because of
the slowness with which dementia can develop, unbiased assessment of any such direct
effects must relate non-participation in such activities to dementia detection rates many
years later. Prospective studies with long-term follow-up can help achieve this by analysing
separately the first and second decade of follow-up. We report such analyses of a large, 20-
year study.
Methods: The UK Million Women Study is a population-based prospective study of 1·3
million women invited for National Health Service (NHS) breast cancer screening in median
year 1998 (IQR 1997-1999). In median year 2001 (IQR 2001-2003), women were asked
about participation in adult education, groups for art, craft, or music, and voluntary work, and
in median year 2006 (IQR 2006-2006), they were asked about reading. All participants were
followed up through electronic linkage to NHS records of hospital admission with mention of
dementia, the first mention of which was the main outcome. Comparing non-participation
with participation in a particular activity, we used Cox regression to assess fully adjusted
dementia risk ratios (RRs) during 0-4, 5-9, and 10 or more years, after information on that
activity was obtained.
Findings: In 2001, 851 307 women with a mean age of 60 years (SD 5) provided
information on participation in adult education, groups for art, craft, or music, and voluntary
work. After 10 years, only 9591 (1%) had been lost to follow-up and 789 339 (93%)
remained alive with no recorded dementia. Follow-up was for a mean of 16 years (SD 3),
during which 31 187 (4%) had at least one hospital admission with mention of dementia,
including 25 636 (3%) with a hospital admission with dementia mentioned for the first time
10 years or more after follow-up began. Non-participation in cognitive or social activities was
associated with higher relative risks of dementia detection only during the first decade after
participation was recorded. During the second decade, there was little association. This was
true for non-participation in adult education (RR 1·04, 99% CI 0·98-1·09), in groups for art,
craft, or music (RR 1·04, 0·99-1·09), in voluntary work (RR 0·96, 0·92-1·00), or in any of
these three (RR 0·99, 0·95-1·03). In 2006, 655 118 women provided information on reading.
For non-reading versus any reading, there were similar associations with dementia, again
with strong attenuation over time since reading was recorded, but longer follow-up is needed
to assess this reliably.
Interpretation: Life has to be lived forwards, but can be understood only backwards. Long
before dementia is diagnosed, there is a progressive reduction in various mental and
physical activities, but this is chiefly because its gradual onset causes inactivity and not
because inactivity causes dementia.

Title: The effect of occupational physical activity on dementia: Results from the
Copenhagen Male Study.

Citation: Scandinavian journal of medicine & science in sports; Feb 2021; vol. 31 (no. 2); p.
446-455

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Author(s): Nabe-Nielsen, Kirsten; Holtermann, Andreas; Gyntelberg, Finn; Garde, Anne
Helene; Islamoska, Sabrina; Prescott, Eva; Schnohr, Peter; Hansen, Åse Marie

Abstract: Leisure-time physical activity (LTPA) reduces the risk of dementia, while the effect
of occupational physical activity (OPA) on dementia is uncertain. Therefore, the aim of this
study was to investigate the effect of OPA on dementia. For comparison, also the
association between LTPA and dementia was analyzed. In this longitudinal study, we used
self-reported questionnaire data on OPA and LTPA collected in 1970-71 from 4721 male
employees, who were 40-59 years old at baseline. Dementia was identified through national
registers and participants were followed from they turned 60 years and until 2016. We
estimated incidence rate ratios (IRR) and adjusted for age, socioeconomic status, marital
status, and psychological stress. In additional analyses, we included health behaviors and
blood pressure and mutually adjusted OPA and LTPA. We identified 697 dementia cases
during 86 557 person-years. We found an IRR of 1.48 (95% CI: 1.05-2.10) among
participants with high OPA compared with participants in sedentary jobs. Participants with
high LTPA had a non-significantly lower IRR of dementia compared with participants with a
sedentary leisure time. In conclusion, LTPA and OPA are differentially associated with
dementia. Therefore, current recommendations regarding the beneficial effect of physical
activity on dementia only concern LTPA, and more research on OPA and dementia is
needed.

Title: stigma reduction (DESeRvE) through education and virtual contact in the
general public: A multi-arm factorial randomised controlled trial.

Citation: Dementia (London, England); Jan 2021 ; p. 1471301220987374
Author(s): Kim, Sarang; Richardson, Alice; Werner, Perla; Anstey, Kaarin J

Objective: To examine the efficacy of the Dementia Stigma Reduction (DESeRvE)
programme, aimed at reducing the general public dementia-related stigma utilising
'education' and 'contact' approaches.
Methods: A total of 1024 Australians aged between 40 and 87 years (M = 60.8, SD = 10.1)
participated in a factorial randomised controlled trial. This trial examined four conditions:
online education programme (ED), contact through simulated contact with people with
dementia and carers (CT), education and contact (ED+CT) and active control. Cognitive,
emotional and behavioural aspects of dementia-related stigma were measured with a
modified Attribution Questionnaire, and dementia knowledge was measured with the
Dementia Knowledge Assessment Scale at the baseline, immediately and 12 weeks after
the completion of the intervention.
Results: All four groups improved (reduction in scores) significantly from baseline to week
12 in dementia-related stigma, and the effects were stronger for those with higher baseline
stigma scores. Intervention groups also improved significantly from baseline in dementia
knowledge. Especially, the ED (β = .85, SE = .07; p < .001) and ED+CT (β = .78, SE = .08; p
< .001) groups at immediate follow-up and CT (β = .21, SE = .09; p < .05) and ED+CT (β =
.32, SE = .09; p < .001) at 12-week follow-up showed significant effects.
Conclusions: Findings suggest that DESeRvE can be a valuable tool to enhance public's
dementia knowledge and reduce dementia-related stigma, especially for those with higher
levels of stigma. Reduction in stigma, however, may take a longer time to achieve, whereas
improvement in dementia knowledge is instant.

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Title: The experiences of those affected by parental young onset dementia: A
qualitative systematic literature review.

Citation: Dementia (London, England); Jan 2021 ; p. 1471301220988231
Author(s): Cartwright, Anna V; Stoner, Charlotte R; Pione, Richard D; Spector, Aimee

Objective: To develop understanding of the lived experiences of children of people living
with young onset dementia, defined as individuals both under and over the age of 18 years
whose parent was diagnosed with dementia before the age of 65 years.
Method: A critical appraisal and thematic synthesis of the available qualitative literature
regarding the lived experience of individuals whose parent has a diagnosis of young onset
dementia. A three-stage approach for conducing thematic synthesis was
followed.RESULTS15 articles were included in the review. Four analytical themes and 11
subthemes were found. The analytical themes were 'making sense of dementia', 'impact of
dementia', 'coping' and 'support'.
Conclusions: The experiences of those affected by parental young onset dementia vary
widely. There is a lack of knowledge and understanding of young onset dementia by
professionals and the public, and a scarcity of appropriate support. This has clinical
implications for professionals working with families affected by young onset dementia, in
particular with regards to service design and delivery.

Title: Residential aged care staff awareness of and engagement with dementia-
specific support services and education.

Citation: Australasian journal on ageing; Jan 2021
Author(s): Williams, Ruth; Ockerby, Cherene; Rawson, Helen; Redley, Bernice; Hutchinson,
Alison

Objective: To examine residential aged care (RAC) staff awareness of and engagement
with dementia-specific support services and education.
Methods: A cross-sectional survey of staff (n = 179) from 36 Victorian RAC facilities.
Results: 60% (n = 107) of respondents were aware of dementia-specific support services,
but only 27% (n = 48) accessed services in the previous 2 years. Approximately 77%
(n = 137) were aware of dementia-specific education, with 66% (n = 115) completing
education in the previous 2 years. A significantly higher proportion of registered nurses had
accessed dementia-specific support services in the past 2 years compared with enrolled
nurses and personal care assistants (P < 0.001).
Conclusion: A relatively large proportion of RAC staff were unaware of available dementia-
specific support services and education. While approximately two thirds accessed such
education, only one in four accessed dementia-specific support services. To optimise the
quality of care for people with dementia, strategies to increase awareness of and access to
these resources are warranted.

Title: Risk of dementia in adults with cerebral palsy: a matched cohort study using
general practice data.

Citation: BMJ open; Jan 2021; vol. 11 (no. 1); p. e042652

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Author(s): Smith, Kimberley J; Peterson, Mark D; Victor, Christina; Ryan, Jennifer M

Objectives: Determine the risk of incident dementia in adults with cerebral palsy (CP)
compared with age, sex and general practice (GP) matched controls.
Design: Retrospective cohort study.
Setting: UK GPs linked into the Clinical Practice Research Datalink
(CPRD).PARTICIPANTSCPRD data were used to identify adults aged 18 or older with a
diagnosis of CP. Each adult with CP was matched to three controls who were matched for
age, sex and GP. In total, 1703 adults with CP and 5109 matched controls were included in
the analysis. The mean baseline age of participants was 33.30 years (SD: 15.48 years) and
46.8% of the sample were female.
Primary outcome: New diagnosis of dementia during the follow-up period (earliest date of
1987 to latest date of 2015).
Results: During the follow-up, 72 people were identified with a new diagnosis of dementia.
The overall proportion of people with and without CP who developed dementia was similar
(CP: n=19, 1.1%; matched controls n=54, 10.0%). The unadjusted HR suggested that
people with CP had an increased hazard of being diagnosed with dementia when compared
with matched controls (HR 2.69, 95% CI 1.44 to 5.00). This association was attenuated
when CP comorbidities (sensory impairment, intellectual disability and epilepsy) were
accounted for (HR 1.92, 95% CI 0.92 to 4.02).
Conclusions: There was no difference in the proportion of people with CP and matched
controls who were diagnosed with dementia during the follow-up. Furthermore, while there
was evidence for an increased hazard of dementia among people with CP, the fact that this
association was attenuated after controlling for comorbidities indicates that this association
may be explained by comorbidities rather than being a direct result of CP. Findings should
be interpreted with caution due to the low number of incident cases of dementia.

Title: Increased short- and long-term mortality following infections in dementia: a
nationwide registry-based cohort study.

Citation: European journal of neurology; Feb 2021; vol. 28 (no. 2); p. 411-420
Author(s): Janbek, J; Taudorf, L; Musaeus, C S; Frimodt-Møller, N; Laursen, T M;
Waldemar, G

Objective: Mortality following infections in dementia has not yet been comprehensively
explored. The aim of this cohort study was to investigate the short- and long-term mortality
following infections in dementia.
Methods: Follow-up was from 1 January 2000 or the 65-year birthday until death,
immigration, or 31 December 2015. Exposure was incident dementia and a first infection.
The outcome was all-cause mortality. Mortality rate ratios (MRRs) were calculated using
Poisson regression in 4 exposure groups (dementia yes/no, infection yes/no) by sex,
infection site, and time since infection.
Results: 1,496,436 people were followed with 12,739,135 person-years. MRR in
dementia/infection was 6.52 (95% confidence interval: 6.43-6.60) and was increased for
infections of all sites. Increased mortality was short term (30 days) and long term (10 years).
Conclusions: Increased mortality in people with dementia identifies them as a particularly
vulnerable group that needs clinical attention.

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Title: Association of Dementia-related Psychosis with Long-term Care Use and Death.

Citation: Neurology; Feb 2021
Author(s): Wetmore, James B; Peng, Yi; Yan, Heng; Li, Suying; Irfan, Muna; Shim, Andrew;
Roetker, Nicholas S; Abler, Victor; Rashid, Nazia; Gilbertson, David T

Objective: We aimed to determine the association of dementia-related psychosis (DRP)
with death and use of long-term care (LTC). We hypothesized that DRP would be associated
with increased risk of death and use of LTC in patients with dementia.
Methods: A retrospective cohort study was performed. Medicare claims from 2008-2016
were used to define cohorts of patients with dementia and DRP. Outcomes were LTC,
defined as nursing home stays of > 100 consecutive days, and death. DRP patients were
directly matched to dementia patients without psychosis by age, sex, race, number of
comorbid conditions, and dementia index year. Association of DRP with outcomes was
evaluated using a Cox proportional hazard regression model.
Results: We identified 256,408 patients with dementia. Within 2 years after the dementia
index date, 13.9% of patients developed DRP and 31.9% had died. Corresponding
estimates at 5 years were 25.5% and 64.0%. Mean age differed little between those who
developed DRP (83.8 ± 7.9 years) and those who did not (83.1 ±8.7 years). DRP patients
were slightly more likely to be female (71.0% vs 68.3%) and white (85.7 vs 82.0%). Within 2
years of developing DRP, 16.1% entered LTC and 52.0% died; corresponding percentages
for non-DRP patients were 8.4% and 30.0%, respectively. In the matched cohort, DRP was
associated with greater risk of LTC (HR 2.36, 2.29-2.44) and death (HR 2.06, 2.02-2.10).
Conclusions: DRP was associated with a more than doubling in the risk of death and a
nearly 2.5-fold increase risk of the need for LTC.

Title: Implementation of Specialist Palliative Care and Outcomes for Hospitalized
Patients with Dementia.

Citation: Journal of the American Geriatrics Society; Feb 2021
Author(s): Lackraj, Deven; Kavalieratos, Dio; Murali, Komal P; Lu, Yewei; Hua, May

Background: In patients with serious illness, use of specialist palliative care may result in
improved quality of life, patient and caregiver satisfaction and advance care planning, as
well as lower health care utilization. However, evidence of efficacy is limited for patients with
dementia, particularly in the setting of an acute hospitalization.
Objective: To determine whether implementation of hospital-based specialist palliative care
was associated with differences in treatment intensity outcomes for hospitalized patients
with dementia.
Design: Retrospective cohort study.
Setting: Fifty-one hospitals in New York State that either did or did not implement a
palliative care program between 2008 and 2014. Hospitals that consistently had a palliative
care program during the study period were excluded.
Participants: Hospitalized patients with dementia.
Measurements: The primary outcome of this study was discharge to hospice from an acute
hospitalization. Secondary outcomes included hospital length of stay, use of mechanical
ventilation and dialysis, and days in intensive care. Difference-in-difference analyses were
performed using multilevel regression to assess the association between implementing a

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palliative care program and outcomes, while adjusting for patient and hospital characteristics
and time trends.
Results: During the study period, 82,118 patients with dementia (mean (SD) age, 83.04
(10.04), 51,170 (62.21%) female) underwent an acute hospitalization, of which 41,227
(50.27%) received care in hospitals that implemented a palliative care program. In
comparison to patients who received care in hospitals without palliative care, patients with
dementia who received care in hospitals after the implementation of palliative care were
more 35% likely to be discharged to hospice (adjusted odds ratio (aOR) = 1.35 (1.19-1.51),
P < .001). No meaningful differences in secondary outcomes were observed.
Conclusion: Implementation of a specialist palliative care program was associated with an
increase in discharge to hospice following acute hospitalization in patients with dementia.

Title: Administering Virtual Reality Therapy to Manage Behavioral and Psychological
Symptoms in Patients With Dementia Admitted to an Acute Care Hospital: Results of
a Pilot Study.

Citation: JMIR formative research; Feb 2021; vol. 5 (no. 2); p. e22406
Author(s): Appel, Lora; Kisonas, Erika; Appel, Eva; Klein, Jennifer; Bartlett, Deanna;
Rosenberg, Jarred; Smith, Christopher Nc

Background: As virtual reality (VR) technologies become increasingly accessible and
affordable, clinicians are eager to try VR therapy as a novel means to manage behavioral
and psychological symptoms of dementia, which are exacerbated during acute care
hospitalization, with the goal of reducing the use of antipsychotics, sedatives, and physical
restraints associated with negative adverse effects, increased length of stay, and caregiver
burden. To date, no evaluations of immersive VR therapy have been reported for patients
with dementia in acute care hospitals.
Objective: This study aimed to determine the feasibility (acceptance, comfort, and safety) of
using immersive VR therapy for people living with dementia (mild, moderate, and advanced)
during acute care hospitalization and explore its potential to manage behavioral and
psychological symptoms of dementia.
Methods: A prospective, longitudinal pilot study was conducted at a community teaching
hospital in Toronto. The study was nonrandomized and unblinded. A total of 10 patients
aged >65 years (mean 86.5, SD 5.7) diagnosed with dementia participated in one or more
research coordinator-facilitated sessions of viewing immersive 360° VR footage of nature
scenes displayed on a Samsung Gear VR head-mounted display. This mixed-methods study
included review of patient charts, standardized observations during the intervention, and pre-
and postintervention semistructured interviews about the VR experience.
Results: All recruited participants (N=10) completed the study. Of the 10 participants, 7
(70%) displayed enjoyment or relaxation during the VR session, which averaged 6 minutes
per view, and 1 (10%) experienced dizziness. No interference between the VR equipment
and hearing aids or medical devices was reported.
Conclusions: It is feasible to expose older people with dementia of various degrees
admitted to an acute care hospital to immersive VR therapy. VR therapy was found to be
acceptable to and comfortable by most participants. This pilot study provides the basis for
conducting the first randomized controlled trial to evaluate the impact of VR therapy on
managing behavioral and psychological symptoms of dementia in acute care hospitals.

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Title: Oral Health Status in Older People with Dementia: A Case-Control Study.

Citation: Journal of clinical medicine; Jan 2021; vol. 10 (no. 3)
Author(s): Lopez-Jornet, Pia; Zamora Lavella, Carmen; Pons-Fuster Lopez, Eduardo;
Tvarijonaviciute, Asta

Abstract: Dementia is characterized by a range of cognitive defects with impaired activities
of daily living that have implications for patient oral health. Objectives. A case-control study
was made of the impact of dementia upon oral health. A total of 152 patients were included:
69 with dementia and 83 controls from the region of Murcia (Spain). The Global
Deterioration Scale (GDS) was used to classify the patients and an oral exploration was
carried out. Odds ratios (ORs) and confidence intervals (CIs) were estimated using
regression models. The patients with more severe disease were significantly more likely to
have fewer natural teeth (OR 11.00, 95%CI 1.28-23.22; p = 0.001), a higher plaque index (p
= 0.001), and a greater bleeding index (p = 0.001) than the control group. These findings
suggest that older adults with dementia have deficient oral health. A higher bleeding index
increases the risk of deterioration of cognitive function. The oral hygiene and health of older
people with dementia need to be improved.

Title: A socially prescribed community service for people living with dementia and
family carers and its long-term effects on well-being.

Citation: Health & social care in the community; Feb 2021
Author(s): Giebel, Clarissa; Morley, Neil; Komuravelli, Aravind

Abstract: Support services for people with dementia are variable depending on the area or
town they live. People with dementia and family carers can often get very little support after
a diagnosis. Services might not be suitable or they may not be aware of the service in the
first place. The aim of this study was to evaluate a socially prescribed community service
provided to people with dementia and family carers offering physical and mental activities.
People with dementia and family carers were recruited from a community centre in the North
West of England to complete in this study. Participants provided demographic information
and completed the Short Warwick-Edinburgh Mental Well-Being Scale at baseline, and after
3 and 6 months. Postcode data were used to generate an Index of Multiple Deprivation
score for information on participants' socioeconomic background. Data were analysed using
paired samples t-tests to compare well-being scores between baseline and follow-up
assessments. A total of 25 people with dementia (n = 14) and family carers (n = 11)
participated in the service. Visits ranged from 1 to 36, with 22 and 15 participants completing
the 3- and 6-month follow-up respectively. Some reasons for discontinuation were lack of
transport and other commitments. Most participants lived in some of the most disadvantaged
neighbourhoods. Compared to baseline, well-being was significantly higher at both follow-
ups. This is one of the first studies reporting the benefits of a social prescribing service in
dementia. Future implementation work needs to design an implementation plan so that the
service can be implemented in other community centres across the country.

Title: Learning and leadership in advanced dementia care.

Citation: Nursing older people; Feb 2021; vol. 33 (no. 1); p. 28-33
Author(s): Macrae, Rhoda; Duffy, Francis John Raymond; Brown, Margaret; Lawson,
Barbara

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Abstract: This article, part of a series in Nursing Older People exploring the nursing care of
people living with advanced dementia, considers learning and leadership. It outlines learning
opportunities about advanced dementia and what developments are needed. The need for
strong leadership at all levels and settings is explored along with the challenges of educating
those who care for the person with advanced dementia. It also outlines educational
opportunities and programmes before illustrating how one nurse leads advanced dementia
care in practice.

Title: 'Too late or too soon': The ethics of advance care planning in dementia setting.

Citation: Bioethics; Feb 2021; vol. 35 (no. 2); p. 178-186
Author(s): Perin, Marta; Ghirotto, Luca; De Panfilis, Ludovica

Abstract: Advance care planning (ACP) is considered a pivotal aid in the decision-making
process, especially for many people living with dementia, who inevitably will lose the
capacity to make decisions at the end of life. In Italy, ACP has been recently regulated by
law 219/2017, leading to the investigation of how physicians deal with ACP in dementia. In
order to comprehend the perception of physicians who provide care for patients with
dementia regarding ACP and to describe their difficulties and needs, this study presents the
results of a qualitative research study performed within a local health authority in northern
Italy. Data were collected by semi-structured interviews with 11 physicians dealing with
patients with dementia and were analysed using interpretative phenomenological analysis.
Four superordinate themes were identified, describing both the difficulties and challenges
perceived by physicians in performing shared ACP in their daily activities. This study
demonstrates that physicians experience troubles synchronizing the time of shared ACP
with the more rapid development of dementia. Results also suggest that further training
about communication on ACP is urgently required to ease the implementation of shared
ACP. A broader involvement of institutions and other professionals is also important in
spreading ACP among healthcare institutions.

Title: Prevalence of adverse drug events and adverse drug reactions in hospital
among older patients with dementia: A systematic review.

Title: British journal of clinical pharmacology; Feb 2021; vol. 87 (no. 2); p. 375-385
Author(s): Sakiris, Marissa Anne; Sawan, Mouna; Hilmer, Sarah Nicole; Awadalla,
Rebecca; Gnjidic, Danijela

Objective: This systematic review aimed to quantify the prevalence of adverse drug events
(ADEs) and adverse drug reactions (ADRs) in older inpatients with dementia.
Methods: A systematic search of observational studies was performed in Embase, Medline,
PsycINFO, International Pharmaceutical Abstracts, Scopus and Informit. Articles published
in English that reported the prevalence of ADEs or ADRs in hospital patients aged 65 years
or older with dementia were included. Two authors reviewed titles and abstracts and all
eligible full-text articles. Relevant information relating to ADEs, ADRs and dementia was
obtained from each article.
Results: In total, 5 articles were included. One study reported the prevalence of ADEs to be
81.5%, defined using the Naranjo algorithm. Four studies assessed the prevalence of ADRs,
ranging from 12.7 to 24.0%, assessed using various methods. One study defined ADRs

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according to the World Health Organization-Uppsala Monitoring Centre criteria, 2 studies
employed the World Health Organization definition and 1 study did not explicitly define
ADRs. The most frequently reported drug classes implicated in ADEs and ADRs were
psychotropic, antihypertensive and analgesic drugs.
Conclusion: Our findings suggest a high prevalence of ADEs and ADRs in older inpatients
with dementia. However, only 1 study documented ADEs and there was variability in
approaches to ADR assessment. A greater understanding of ADEs and ADRs, as well as
tailored assessment tools, will promote prevention of ADEs and ADRs in people with
dementia.

Title: Costs and cost-effectiveness of the meeting centres support programme for
people living with dementia and carers in Italy, Poland and the UK: The MEETINGDEM
study.

Citation: Health & social care in the community; Jan 2021
Author(s): Henderson, Catherine; Rehill, Amritpal; Brooker, Dawn; Evans, Simon C; Evans,
Shirley B; Bray, Jennifer; Saibene, Francesca Lea; Scorolli, Claudia; Szcześniak, Dorota;
d'Arma, Alessia; Lion, Katarzyna; Atkinson, Teresa; Farina, Elisabetta; Rymaszewska,
Joanna; Chattat, Rabih; Meiland, Franka; Dröes, Rose-Marie; Knapp, Martin

Abstract: We examined the costs and cost-effectiveness of the Meeting Centre Support
Programme (MCSP) implemented and piloted in the UK, Poland and Italy, replicating the
Dutch Meeting Centre model. Dutch Meeting Centres combine day services for people with
dementia with carer support. Data were collected over 2015-2016 from MCSP and usual
care (UC) participants (people with dementia-carer dyads) at baseline and 6 months. We
examined participants' health and social care (HSC), and societal costs, including Meeting
Centre (MC) attendances. Costs and outcomes in MCSP and UC groups were compared.
Primary outcomes: Persons with dementia: quality-adjusted life years (EQ-5D-5L-derived);
QOL-AD. DQoL was examined as a secondary outcome. Carers: Short Sense of
Competence Questionnaire (SSCQ). Incremental cost-effectiveness ratios (ICER) and cost-
effectiveness acceptability curves were obtained by bootstrapping outcome and cost
regression estimates. Eighty-three MCSP and 69 UC dyads were analysed. The 6-month
cost of providing MCSP was €4,703; participants with dementia attended MC a mean of 45
times and carers 15 times. Including intervention costs, adjusted 6-month HSC costs were
€5,941higher in MCSP than in UC.
From the HSC perspective: in terms of QALY, the probability of cost-effectiveness was
zero over willingness-to-pay (WTP) ranging from €0 to €350,000. On QOL-AD, the
probability of cost-effectiveness of MCSP was 50% at WTP of €5,000 for a one-point
increase. A one-point gain in the DQoL positive affect subscale had a probability of cost-
effectiveness of 99% at WTP over €8,000. On SSCQ, no significant difference was found
between MCSP and UC. Evidence for cost-effectiveness of MCSP was mixed but suggests
that it may be cost-effective in relation to gains in dementia-specific quality of life measures.
MCs offer effective tailored post-diagnostic support services to both people with dementia
and carers in a context where few evidence-based alternatives to formal home-based social
services may be available.

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Title: Developing a dementia care leaders' toolkit for older patients with cognitive
impairment.

Citation: Nursing older people; Feb 2021; vol. 33 (no. 1); p. 14-19
Author(s): Abley, Clare

Abstract: A recent review of the progress that has been made in meeting the government's
Challenge on Dementia 2020 detailed the variability, and in some cases suboptimal quality,
of hospital care for people with dementia. The review also identified the need for
improvements in assessing the individual needs of people with dementia while in hospital,
including their emotional and social needs. This article focuses on the development and
implementation of an evidence-based toolkit to improve the hospital care of older patients
with cognitive impairment, including dementia and/or delirium. The toolkit's focus is on
optimising the patient experience of people with cognitive impairment who have been
admitted to hospital. The toolkit also promotes the importance of person-centred care and
communication skills.

Title: Interventions at Hospital Discharge to Guide Caregivers in Medication
Management for People Living with Dementia: a Systematic Review.

Citation: Journal of general internal medicine; Feb 2021
Author(s): Sawan, Mouna J; Wennekers, Damian; Sakiris, Marissa; Gnjidic, Danijela

Objective: Hospital discharge has a significant impact on the continuity of care for people
living with dementia. Clear guidance on medication management should be provided to
caregivers of people living with dementia to ensure appropriate use of medications post-
discharge. This study aims to identify and appraise the impact of interventions at hospital
discharge to guide caregivers in the medication management for people living with
dementia.
Method: A systematic search of original studies was performed in Medline, Embase,
PsycINFO, and CINAHL. Articles published in English that reported on interventions to guide
caregivers in medication management for people living with dementia were included. Two
authors independently reviewed titles and abstract. Full-text articles were assessed for
eligibility and quality assessment was conducted by two authors.
Results: A total of five studies were included with a range of interventions that were typically
delivered post-discharge by a multidisciplinary team and most targeted administration of
medications by caregivers. Overall, three types of discharge interventions were identified
including a pre-discharge caregiver educational intervention, a post-
discharge multidisciplinary team intervention, and discharge summary documentation
intervention at transitions of care. Of these, a pre-discharge caregiver education led to
shorter hospital stay (25 days vs. 31 days, p = 0.005). A post-discharge intervention that
included follow-up visits resulted in lower use of high-risk medications (19% vs. 40%), and
reduction in 30-day re-hospitalization rates (11% vs. 20%). In contrast, in another post-
discharge intervention study, no difference in one-month re-hospitalization rates (8.4% vs.
8.0%, p = 0.82) was demonstrated. In another study, a post-discharge hospital educational
program provided to caregivers led to significantly reduced caregiver burden (31.7 ± 17.6
(SD) pre-intervention to 27.7 ± 16.9 (SD) post-intervention (p = 0.037)).
Discussion: Current findings suggest there is a need for well-designed interventions to
guide caregivers in all aspects of medication management for people living with dementia,
and should include support for caregivers in care coordination.

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Title: 'You come because it is an interesting place': The impact of attending a heritage
programme on the well-being of people living with dementia and their care partners.

Citation: Dementia (London, England); Jan 2021 ; p. 1471301220985380
Author(s): Innes, Anthea; Scholar, Helen F; Haragalova, Jana; Sharma, Monika

Abstract: Promoting access to heritage settings has been acknowledged as a way to
promote well-being in the United Kingdom for people living with dementia and their care
partners. Yet there is a lack of information available internationally on the contribution of
heritage sites to promote well-being and social inclusion for those living with dementia. This
study addresses this gap by reporting on the impact for 48 people of participating in the
'Sensory Palaces' (SP) programme run by Historic Royal Palaces at Hampton Court and
Kew Palaces in the United Kingdom. Two primary data sources were used; post-session
interviews involving 30 participants (the person living with dementia and/or their care
partners), and 131 sets of self-complete pre- and post-session mood questionnaires
administered directly before and after SP session attendance. Analysis of the data sets is
presented under three themes: enjoyment and engagement; connecting and learning and
place, space and time. The findings demonstrate that participants highly valued the heritage
sessions and reported positively on the impact this had for their individual well-being and
their relationships with one another. This study highlights the opportunity for heritage sites to
contribute to promoting well-being for people living with dementia.

Title: Assistance provided in daily tasks and difficulty experienced by caregivers for
people living with dementia.

Citation: Australian occupational therapy journal; Feb 2021
Author(s): Amato, Carmen; Burridge, Gemma; Basic, David; Huynh, Danielle; Gibbons,
Emma; Ní Chróinín, Danielle; Liu, Karen P Y

Objective: There is a growing body of research that addresses caregivers for people living
with dementia. However, there is limited research looking at the perceptions of caregivers in
specific daily tasks. To address this gap, this study investigated the assistance caregivers
provided and the difficulty they faced when completing daily tasks for people with dementia
and, additionally, how these experiences might relate to their perceived burden.
Methods: Sixty-two caregivers for people living with dementia completed the study. Data
were collected, through a survey, on the level of assistance caregivers provided, and the
difficulties they experienced. The Zarit Burden Scale was used to measure the level of
perceived burden. Descriptive statistics and Spearman's correlation coefficient were used to
report the results and the relationship between the perceived burden, the level of assistance
provided, and the difficulty experienced.
Results: The activities of daily living that caregivers provided the most assistance for was
dressing and showering. Most instrumental activities of daily living required maximal to total
assistance. Overall, the caregivers did not experience a high level of difficulty with assisting
with these daily tasks in comparison to the level of assistance provided. The caregiver
burden was associated significantly with the difficulties experienced in dressing, toileting,
and showering (rho = 0.30-0.75), most instrumental activities of daily living (rho = 0.29-0.47),
but not with the level of assistance provided.

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