Abstract
Introduction
Dementia cafés have recently been attracting attention. The increased involvement of citizen volunteers and the competence of dementia café staff could enhance the potential of dementia cafés. The aim of the present study was to examine enhancement of the competence of citizen volunteers using a new assessment tool.
Methods
This cross-sectional analysis included 433 dementia café staff members, including medical and care professionals and citizen volunteers. A 20-item dementia café staff self-assessment (DCSA) instrument was newly developed. After confirmation of the reliability and validity of the instrument, DCSA scores among citizen volunteers were evaluated.
Results
DCSA showed very good psychometric properties. The mean (±SD) DCSA score was significantly higher for café staff with a medical and care professional background (n = 267) than for citizen volunteers (n = 166) (2.2±0.5 vs. 1.7±0.7, respectively; p < 0.001). The DCSA scores of citizen volunteers became significantly higher with increasing attendance (minimum: n = 24; 1.3±0.7; intermediate: n = 65; 1.6±0.6; and frequent: n = 77; 1.8±0.7; p < 0.01).
Conclusion
Assessment of the competence of dementia café staff using the DCSA revealed the potential of citizen volunteers. This tool could also enhance the potential of dementia cafés.
Keywords: Dementia care, Dementia café, Self-assessment, Volunteers
Introduction
Dementia places a serious burden on the person with dementia and on family caregivers [1, 2]. The sense of fear of and the stigma surrounding dementia remain strong in the community despite various efforts [3, 4]. To address these challenges, which cannot be solved by medical and care systems alone, a new approach is required [5]. In recent years, opportunities have emerged to discuss dementia openly in the form of cafés. At such cafés, interested people with dementia, their families, people in the community, medical and care professionals, and local government officials gather and interact [6, 7]. These cafés, referred to as Alzheimer's or dementia cafés, have been developed as locations that offer both new approaches to the psychosocial difficulties of dementia and a relaxing place for interaction [6, 7].
However, dementia cafés often lack facility standards. Dementia café staff have not been provided with vocational training and often learn what is required for their work on their own. Since the facility standards and staff abilities have not been clearly defined, research on the management styles and effectiveness of dementia cafés remains limited [6, 8, 9, 10, 11]. However, these need to be established to advance the development of dementia cafés as a useful community resource. In our previous research, we found that dementia café staff play an essential role, and that medical/care professionals and volunteers can cooperate to manage dementia cafés effectively [8]. However, to clarify the function and role of dementia cafés, a dementia café staff capacity indicator is needed.
Therefore, in the present study, based on the practice of dementia cafés and prior research regarding dementia care, we created a dementia café staff self-assessment (DCSA) instrument composed of elements thought to be required for dementia café staff. We then verified its reliability and validity and clarified its significance.
Methods
Participants
A total of 69 dementia cafés involving 433 staff members from 3 regions participated in the present study. The reliability and validity of the DCSA were verified at 14 cafés in the Kita ward of metropolitan Nagoya City (area 1) involving 62 staff members (47 medical/care professionals and 15 volunteers). For test-retest analysis, 50 of the 62 staff members responded to a survey twice at 1-month intervals. Although dementia cafés in Japan are promoted by the National Strategy for Dementia, there are differences by region with regard to their establishment, for example, between urban and rural areas. Therefore, 2 other café groups were asked to participate. The second group consisted of cafés that had successfully applied for subsidies to establish dementia cafés by the Asahi Newspaper Social Welfare Organization. In total, 25 cafés and 174 staff members (88 professionals and 86 volunteers) participated (area 2). The third group was cafés belonging to the Dementia Café Association of the Kyoto Prefecture, where dementia cafés were established at an early stage in Japan, and 197 staff members (132 professionals and 65 volunteers) in 30 cafés participated (area 3). The occupations of the medical and care professionals included were as follows: 1 medical doctor, 2 dentists, 30 nurses including public health nurses, 3 pharmacists, 11 rehabilitation therapists, 3 psychiatric social workers, 20 social workers, 57 certified care workers, 109 care managers, 3 nutritionists, and 28 others including 6 home helpers, 2 radiological technologists, and 1 clinical psychologist. There were 4 different types of content offered at the participating cafés: (1) cafés with no fixed programs (n = 14); (2) cafés with a combination of mini-lectures, music time, and café time (n = 24); (3) cafés with a combination of seasonal events or activities and café time (n = 16); and (4) others (n = 15).
Development of the DCSA
Dementia cafés are focused on dementia, but the needs of the guests who gather there, that is, people with dementia, their families, and people in the community who are concerned or interested in dementia, are diverse [9]. To be considered a well-appraised location, it is thought that a dementia café staff should have various abilities. The DCSA is intended to not only assess staff knowledge of dementia but also to allow staff to check their own interaction skills.
The DCSA was created based primarily on our practice and research in a memory clinic and our management of a dementia café [8, 12, 13]. We referred to previous studies on dementia care and dementia cafés [1, 7, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27]. We also referred to the challenges related to dementia care in the community [3, 4]. The DCSA is composed of 20 question items divided into 4 parts (Fig. 1).
Fig. 1.
DCSA instrument. The DCSA is composed of 20 question items divided into 4 parts. The DCSA items are assessed on a 4-point Likert scale from 0 (impossible or disagree) to 3 (possible or agree). Q, question.
DCSA Survey
After an explanatory meeting, a survey using the DCSA was conducted in area 1 between September and November 2017. The DCSA items are assessed on a 4-point Likert scale from 0 (impossible or disagree) to 3 (possible or agree). A leaflet briefly explaining the meaning of each question was also handed out. Each staff member was also asked to fill a separate questionnaire to provide their age, gender, care experience for persons with dementia, professional experience in a medical or care occupation, and number of times participating in a dementia café. The experience of participating in dementia cafés was assessed based on 3 categories (minimum: 3 times or fewer; intermediate: between 4 and 10 times; and frequent: more than 11 times). Using another questionnaire, a representative of each café was asked about the period since the café was started, the frequency of café meetings, the café meeting hours, the number and details of guests in the cafés, and the number of café staff. In areas 2 and 3, questionnaires were mailed directly. The survey in area 2 was conducted between November 2017 and January 2018, and that in area 3 was conducted between February and March 2018. This study was reviewed and approved by the ethics committee of Fujita Health University, and written informed consent was obtained from all of the participants.
Statistical Analysis
Group differences in research areas and the characteristics of the café staff were examined using one-way analysis of variance and post hoc Bonferroni tests. Student's t test was used to compare continuous variables between 2 groups. χ2 analysis was used to compare categorical variables. Reliability was assessed using Cronbach's α coefficient. Test-retest reliability was analyzed using intraclass correlations. Construct validity was assessed using exploratory factor analysis with promax rotation. The suitability of the data for factor analysis was checked using Keiser-Meyer-Olkin measure and Bartlett's test of sphericity. Logistic regression analysis was performed to explore the factors associated with the scores of the volunteers. All analyses were performed using SPSS (version 25.0; SPSS Inc., Chicago, IL, USA). All statistical tests were two-sided, and p < 0.05 was considered statistically significant. In case of multiple outcomes in the comparison of DCSA items, the Benjamini and Hochberg method was applied [28].
Results
In the survey in area 1, Cronbach's α of all of the items was 0.953, and the test-retest reliability was good (r = 0.773, p < 0.001). To verify the content validity of the DCSA, the scores of the professionals and citizen volunteers were compared. The mean (±SD) DCSA score was 2.2±0.5 for professionals (n = 47), which was significantly higher than that for citizen volunteers (n = 15; 1.7±1.0; p < 0.05).
Since the survey in area 1 showed good reliability and validity, the survey was conducted in 2 other areas. The answers of staff in the 3 areas were integrated to further validate the DCSA. The Keiser-Meyer-Olkin measure for sampling adequacy was 0.963 and Bartlett's test of sphericity was significant (p < 0.001). The scree plot suggested a 3-factor structure. The solution accounted for 68.2% of the variance. Factor loadings and Cronbach's α for each factor are shown (Table 1). Although the three-factor structure was different from original 4 parts, they were quite similar. All 6 items of original part 1 correspond to factor 2. Seven items of original part 2 correspond to factor 1 and 2 items of original part 3 and 1 item of original part 4 belong to factor 1. Two items of original part 3 and 2 items of original part 4 were loaded to factor 3. Since all 3 factors showed significantly positive correlations for each other and considering educational property of DCSA, the average of the total and individual DCSA scores classified in the original 4 parts were decided to show in the following analysis.
Table 1.
Factor analysis and factor loadings for DCSA
| Loading on 3 factors |
|||
|---|---|---|---|
| 1 | 2 | 3 | |
| Partnership with people with dementia | |||
| Q1 | −0.083 | 0.567 | 0.253 |
| Q2 | −0.019 | 0.816 | 0.031 |
| Q3 | 0.26 | 0.711 | −0.149 |
| Q4 | 0.15 | 0.75 | −0.07 |
| Q5 | 0.051 | 0.634 | 0.105 |
| Q6 | 0.038 | 0.669 | 0.164 |
| Staying considerate of feelings of families of people with dementia | |||
| Q7 | 0.405 | 0.347 | 0.049 |
| Q8 | 0.808 | 0.182 | −0.133 |
| Q9 | 0.806 | 0.209 | −0.158 |
| Q10 | 0.936 | −0.156 | −0.014 |
| Q11 | 0.642 | 0.094 | 0.073 |
| Q12 | 0.77 | 0.118 | 0.012 |
| Q13 | 0.746 | 0.098 | 0.024 |
| Knowledge about dementia as café staff | |||
| Q14 | 0.765 | 0.103 | −0.034 |
| Q15 | 0.226 | 0.236 | 0.409 |
| Q16 | 0.364 | −0.125 | 0.523 |
| Q17 | 0.623 | 0.015 | 0.21 |
| Attitude to create a cozy place | |||
| Q18 | −0.046 | 0.073 | 0.758 |
| Q19 | 0.605 | −0.081 | 0.258 |
| Q20 | −0.117 | 0.051 | 0.653 |
| Cronbach's α for each factor | 0.948 | 0.901 | 0.787 |
Factors loaded on factor 1 (10 items), factor 2 (6 items) and factor 3 (4 items) are indicated in bold, respectively. All of them showed factor loading above 0.40. Q, question.
The comparison of DCSA average of total scores of the medical and care professionals (n = 267) and citizen volunteers (n = 166) showed that the professionals had significantly higher scores than the citizen volunteers (p < 0.01). Looking at the questions individually, the professionals had significantly higher values for 19 out of 20 items (Table 2).
Table 2.
Differences in DCSA scores between medical and care professionals and citizen volunteers
| Professionals (n = 267) |
Citizen volunteers (n = 166) |
p | |||
|---|---|---|---|---|---|
| mean | SD | mean | SD | ||
| Partnership with people with dementia | |||||
| Q1 | 2.5 | 0.6 | 2.2 | 0.9 | <0.001a |
| Q2 | 2.6 | 0.6 | 2.0 | 1.0 | <0.001a |
| Q3 | 2.3 | 0.7 | 1.5 | 0.8 | <0.001a |
| Q4 | 2.4 | 0.6 | 1.8 | 0.9 | <0.001a |
| Q5 | 2.2 | 0.7 | 1.8 | 0.9 | <0.001a |
| Q6 | 2.4 | 0.6 | 1.9 | 0.9 | <0.001a |
| Staying considerate of the feelings of families of people with dementia | |||||
| Q7 | 2.3 | 0.7 | 2.0 | 0.9 | <0.001a |
| Q8 | 2.i | 0.7 | 1.3 | 1.0 | <0.001a |
| Q9 | 2.i | 0.7 | 1.4 | 1.0 | <0.001a |
| Q10 | 2.2 | 0.8 | 1.3 | 0.9 | <0.001a |
| Q11 | 2.2 | 0.8 | 1.7 | 0.9 | <0.001a |
| Q12 | 1.9 | 0.7 | 1.2 | 1.0 | <0.001a |
| Q13 | 2.0 | 0.8 | 1.4 | 1.0 | <0.001a |
| Knowledge about dementia as café staff | |||||
| Q14 | 1.8 | 0.9 | 0.9 | 0.9 | <0.001a |
| Q15 | 2.5 | 0.6 | 1.9 | 0.8 | <0.001a |
| Q16 | 2.4 | 0.7 | 2.0 | 0.9 | <0.001a |
| Q17 | 1.7 | 0.9 | 1.2 | 1.0 | <0.001a |
| Attitude to create a cozy place | |||||
| Q18 | 2.4 | 0.6 | 2.3 | 0.8 | 0.017a |
| Q19 | 1.9 | 0.8 | 1.5 | 0.9 | <0.001a |
| Q20 | 2.6 | 0.6 | 2.6 | 0.7 | 0.323 |
| Average DCSA score | 2.2 | 0.5 | 1.7 | 0.7 | <0.001 |
Significant using the Benjamini and Hochberg method for multiple testing. Q, question.
An analysis of the DCSA scores of citizen volunteers was then carried out with regard to 2 aspects: the number of times participating in a dementia café, and whether they had cared for people with dementia privately. A comparison of the DCSA scores of 3 groups divided by the frequency of attendance showed that the average of total scores increased depending on the frequency of participation; these increases were significant in 7 questions (Table 3).
Table 3.
Association between DCSA scores and attendance to dementia cafés among citizen volunteers
| Minimum (n = 24) |
Intermediate (n = 65) |
Frequent (n = 77) |
p | Post hoc | ||||
|---|---|---|---|---|---|---|---|---|
| mean | SD | mean | SD | mean | SD | |||
| Average | 1.3 | 0.7 | 1.6 | 0.6 | 1.8 | 0.7 | 0.009 | 1<3 |
| Partnership with people with dementia | ||||||||
| Q1 | 1.8 | 0.9 | 2.1 | 0.8 | 2.4 | 0.8 | 0.005a | 1<3 |
| Q2 | 1.7 | 1.0 | 2.0 | 0.9 | 2.2 | 1.0 | 0.084 | NA |
| Q3 | 1.2 | 0.9 | 1.4 | 0.8 | 1.7 | 0.8 | 0.005a | 1<3, 2<3 |
| Q4 | 1.4 | 1.0 | 1.7 | 0.9 | 2.1 | 0.8 | 0.001a | 1<3, 2<3 |
| Q5 | 1.5 | 0.9 | 1.8 | 0.8 | 1.9 | 1.0 | 0.169 | NA |
| Q6 | 1.5 | 0.9 | 1.8 | 0.8 | 2.1 | 0.8 | 0.005a | 1<3 |
| Staying considerate of the feelings of families of people with dementia | ||||||||
| Q7 | 1.6 | 0.9 | 1.9 | 0.9 | 2.1 | 0.9 | 0.020 | NA |
| Q8 | 1.0 | 1.0 | 1.3 | 0.9 | 1.4 | 1.0 | 0.236 | NA |
| Q9 | 1.1 | 1.0 | 1.3 | 0.9 | 1.4 | 1.0 | 0.385 | NA |
| Q10 | 0.9 | 0.8 | 1.3 | 0.9 | 1.4 | 1.0 | 0.088 | NA |
| Q11 | 1.3 | 1.0 | 1.6 | 0.9 | 1.9 | 0.9 | 0.004a | 1<3 |
| Q12 | 0.8 | 1.0 | 1.2 | 0.9 | 1.4 | 1.0 | 0.055 | NA |
| Q13 | 1.0 | 0.9 | 1.5 | 0.9 | 1.4 | 1.0 | 0.124 | NA |
| Knowledge about dementia as café staff | ||||||||
| Q14 | 0.5 | 0.8 | 0.9 | 0.8 | 1.0 | 1.0 | 0.094 | NA |
| Q15 | 1.4 | 0.8 | 1.9 | 0.8 | 2.1 | 0.8 | 0.001a | 1<3 |
| Q16 | 1.8 | 1.1 | 1.9 | 1.0 | 2.1 | 0.8 | 0.273 | NA |
| Q17 | 0.8 | 0.8 | 1.2 | 0.9 | 1.3 | 1.1 | 0.118 | NA |
| Attitude to create a cozy place | ||||||||
| Q18 | 2.1 | 0.8 | 2.2 | 0.8 | 2.4 | 0.7 | 0.327 | NA |
| Q19 | 1.4 | 1.0 | 1.5 | 1.0 | 1.6 | 0.9 | 0.703 | NA |
| Q20 | 2.2 | 0.7 | 2.5 | 0.8 | 2.7 | 0.6 | 0.004a | 1<3 |
Regarding the experience of caring for people with dementia, 89 staff had no experience, whereas 77 did. Those with experience providing care had higher scores for all 20 questions on the DCSA, 19 of which were significantly higher (data not shown). No significant relationship was found between the experience of participating in dementia cafés and the care experience according to the chi-square analysis (p = 0.075). To analyze the factors related to the DCSA scores of citizen volunteers in more detail, a multiple regression analysis was performed. The average DCSA total score was set as a dependent factor, and the experience of participating in dementia cafés and caring for people with dementia was set as an independent factor. The analysis was conducted by adjusting for age and gender. The results showed that the experiences of participating in dementia cafés and caring for people with dementia were independently related to high DCSA scores (R2 = 0.204, p < 0.001; care experience: β = 0.383, p < 0.001; participation experience: β = 0.162, p = 0.031).
Discussion
In this research, the DCSA, which is composed of 20 questions, was created as an index to assess the ability of dementia café staff, and its reliability and validity were confirmed. It was also found that self-rated scores improved among citizen volunteers with increasing participation in dementia cafés. In addition, many citizen volunteers had private care experience, and they also showed high scores compared with those without such experience. These 2 factors of citizen volunteers were independently related to higher DCSA scores.
Collaboration between citizen volunteers and professionals has been shown to be important for the establishment of dementia cafés [8, 27]. It is important that professionals continue to be involved in dementia café management because of the specialized nature of the disease. However, the results of the present study suggest that citizen volunteers can have the abilities needed to become dementia café staff. These results could have important implications for future dementia café management and the provision of dementia care in the community.
As included in question 15 of the DCSA, the well-being of people with dementia is thought to be affected by the communication ability of the staff [14, 18]. Therefore, café staff need to have communication skills in accordance with cognitive dysfunction, the characteristics of the disease, and the presence or absence of disease awareness of people with dementia [20]. In addition, it is important to communicate with people with dementia as a partner as opposed to just providing support. The results of this study also found that the ability to be a partner to someone with dementia was significantly higher in professionals than in citizen volunteers; however, citizen volunteers also improved on 4 of the 6 questions when their participation increased. The interaction of citizen volunteers with people with dementia at dementia cafés could therefore contribute to deepening their understanding.
It has been repeatedly shown that dementia causes serious burdens on family caregivers [16, 21]. The journey with dementia often lasts more than several years, and during this course the challenges associated with caring change [16]. Dementia cafés could be suitable for family caregivers since they are usually located in the local neighborhood and can be accessed freely for long time. In the present study, it was shown that even citizen volunteers have, in part, the ability to cope with family caregivers as long as they have more time to participate as café staff or private experience caring for people with dementia.
On the other hand, it was shown that it was not easy for citizen volunteers to explain social resources to families of people with dementia or to recognize treatment goals and periods separately for cognitive impairment and BPSD. As these are more specialized questions, it is expected that longer-term experience would lead to improved self-assessment scores. Alternatively, it may not be necessary for citizen volunteers to have all of these skills, and it may be possible to continue their involvement in cooperation with professionals.
Citizen volunteers could be expected to play more roles than professionals. First, since the number of people with dementia is large and increasing, it is anticipated that not only caregiving by family members and professionals but also community-integrated care with the participation of citizen volunteers would be important considering the expanding care costs and stigma in the community [4, 29]. Second, citizen volunteers with various work and life experiences may be able to offer a variety of valuable abilities [30]. Third, as citizens, citizen volunteers could be closer to the guests who gather in dementia cafés and may be able to communicate with guests and understand their feelings, which medical and care professionals often find difficult [8].
In addition to assessing the abilities of individual dementia café staff, the DCSA can also reveal the overall ability of each dementia café by averaging the self-rated scores of the participating staff. The DCSA may also be used as an indicator for changes in staff over time and for measuring the degree of achievement in terms of learning and education. The function of dementia cafés cannot be explained by only the number and capacity of the staff; the location of the café and its cooperative relationship with other local resources are also important. However, the competence of the staff is a major determinant factor of dementia café functioning, which may be enhanced by the appropriate use of DCSA.
This study did have some limitations. First, it was a cross-sectional survey. Although the results showed that the self-rated scores of the citizen volunteer staff improved with increased participation, whether participation increases self-assessment scores if the same staff are surveyed longitudinally remains to be verified. Second, in this study, we decided to score the ability of the staff in the form of self-assessments. With regard to dementia cafés as organizations carried out mainly by volunteers, including professionals joining as volunteers, evaluations from others may not be appropriate for evaluating the views of volunteers. However, self-evaluations cannot necessarily express staff ability objectively. It would therefore be desirable to create an indicator that combines evaluations by café guests in addition to the DCSA.
In conclusion, DCSA could be expected not only to enhance the capacity of dementia cafés and their staff but also to help establish a new form of dementia care.
Statement of Ethics
This study was reviewed and approved by the ethics committee of Fujita Health University, and written informed consent was obtained from all of the participants.
Disclosure Statement
There is no conflict of interests to declare.
Funding Sources
This study was supported by a grant for promoting research from Fujita Health University (to H.T.). The funder of this study had no role in this study.
Author Contributions
H.T. designed this study, collected the data, performed the statistical analysis, interpreted the results, and wrote this paper. F.Y. designed this study and collected the data. S.M. searched the literature and contributed to the writing of this paper. H.Y. contributed to the writing of this paper. Y.S. designed this study, collected the data, and interpreted the results. All of the authors approved the final version of this paper for submission.
Acknowledgments
The authors thank all of the participants of this study. We also thank Ms. Sugako Ochiai and her colleagues at the Asahi Newspaper Social Welfare Organization and Mr. Yuichiro Kawakita of the Dementia Café Association in Kyoto Prefecture for their helpful support during this study.
References
- 1.Clare L. We'll fight it as long as we can: coping with the onset of Alzheimer's disease. Aging Ment Health. 2002 May;6((2)):139–48. doi: 10.1080/13607860220126826. [DOI] [PubMed] [Google Scholar]
- 2.Schulz R, O'Brien AT, Bookwala J, Fleissner K. Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. Gerontologist. 1995 Dec;35((6)):771–91. doi: 10.1093/geront/35.6.771. [DOI] [PubMed] [Google Scholar]
- 3.Takechi H, Mori T, Hashimoto T, Nakamura S. Present status and road map to achieve inclusive and holistic care for dementia in a Japanese community: analysis using the Delphi method. Dement Geriatr Cogn Disord. 2014;38((3-4)):186–99. doi: 10.1159/000358821. [DOI] [PubMed] [Google Scholar]
- 4.World Health Organization andand Alzheimer's disease international Dementia: a public health priority. 2012. ( http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf)
- 5.The Lancet Neurology Response to the growing dementia burden must be faster. Lancet Neurol. 2018 Aug;17((8)):651. doi: 10.1016/S1474-4422(18)30256-4. [DOI] [PubMed] [Google Scholar]
- 6.Dow B, Haralambous B, Hempton C, Hunt S, Calleja D. Evaluation of Alzheimer's Australia Vic Memory Lane Cafés. Int Psychogeriatr. 2011 Mar;23((2)):246–55. doi: 10.1017/S1041610210001560. [DOI] [PubMed] [Google Scholar]
- 7.Miesen B, Jones GM. The Alzheimer Cafe´ concept: A response to the trauma, drama and tragedy of dementia. In: Jones GMM, Miesen BML, editors. Caregiving in dementia: research and applications. Hove: Brunner-Routledge; 2004. pp. p. 307–34. [Google Scholar]
- 8.Takechi H, Sugihara Y, Matsumoto H, Yamada H. A Dementia Café as a Bridgehead for Community-Inclusive Care: Qualitative Analysis of Observations by On-the-Job Training Participants in a Dementia Café. Dement Geriatr Cogn Disord. 2018;46((3-4)):128–39. doi: 10.1159/000492174. [DOI] [PubMed] [Google Scholar]
- 9.Takechi H, Yabuki T, Takahashi M, Osada H, Kato S. Dementia Cafés as a Community Resource for Persons With Early-Stage Cognitive Disorders: A Nationwide Survey in Japan. J Am Med Dir Assoc. 2019 Dec;20((12)):1515–20. doi: 10.1016/j.jamda.2019.04.017. [DOI] [PubMed] [Google Scholar]
- 10.Jones SM, Killett A, Mioshi E. What Factors Predict Family Caregivers' Attendance at Dementia Cafés? J Alzheimers Dis. 2018;64((4)):1337–45. doi: 10.3233/JAD-180377. [DOI] [PubMed] [Google Scholar]
- 11.Greenwood N, Smith R, Akhtar F, Richardson A. A qualitative study of carers' experiences of dementia cafés: a place to feel supported and be yourself. BMC Geriatr. 2017 Jul;17((1)):164. doi: 10.1186/s12877-017-0559-4. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Takechi H, Sugihara Y, Kokuryu A, Nishida M, Yamada H, Arai H, et al. Both conventional indices of cognitive function and frailty predict levels of care required in a long-term care insurance program for memory clinic patients in Japan. Geriatr Gerontol Int. 2012 Oct;12((4)):630–6. doi: 10.1111/j.1447-0594.2011.00828.x. [DOI] [PubMed] [Google Scholar]
- 13.Takechi H, Kokuryu A, Kubota T, Yamada H. Relative Preservation of Advanced Activities in Daily Living among Patients with Mild-to-Moderate Dementia in the Community and Overview of Support Provided by Family Caregivers. Int J Alzheimers Dis. 2012;2012:418289. doi: 10.1155/2012/418289. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Kitwood T. Dementia Reconsidered: The Person Comes First. Buckingham, England: Open University Press; 1997. [Google Scholar]
- 15.Brodaty H, Arasaratnam C. Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. Am J Psychiatry. 2012 Sep;169((9)):946–53. doi: 10.1176/appi.ajp.2012.11101529. [DOI] [PubMed] [Google Scholar]
- 16.Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014 Mar;311((10)):1052–60. doi: 10.1001/jama.2014.304. [DOI] [PubMed] [Google Scholar]
- 17.Eggenberger E, Heimerl K, Bennett MI. Communication skills training in dementia care: a systematic review of effectiveness, training content, and didactic methods in different care settings. Int Psychogeriatr. 2013 Mar;25((3)):345–58. doi: 10.1017/S1041610212001664. [DOI] [PubMed] [Google Scholar]
- 18.Chenoweth L, King MT, Jeon YH, Brodaty H, Stein-Parbury J, Norman R, et al. Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: a cluster-randomised trial. Lancet Neurol. 2009 Apr;8((4)):317–25. doi: 10.1016/S1474-4422(09)70045-6. [DOI] [PubMed] [Google Scholar]
- 19.Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, et al. Dementia prevention, intervention, and care. Lancet. 2017 Dec;390((10113)):2673–734. doi: 10.1016/S0140-6736(17)31363-6. [DOI] [PubMed] [Google Scholar]
- 20.Clare L, Nelis SM, Martyr A, Whitaker CJ, Marková IS, Roth I, et al. Longitudinal trajectories of awareness in early-stage dementia. Alzheimer Dis Assoc Disord. 2012 Apr-Jun;26((2)):140–7. doi: 10.1097/WAD.0b013e31822c55c4. [DOI] [PubMed] [Google Scholar]
- 21.Dunkin JJ, Anderson-Hanley C. Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurology. 1998 Jul;51((1Suppl 1)):S53–60. doi: 10.1212/wnl.51.1_suppl_1.s53. [DOI] [PubMed] [Google Scholar]
- 22.Del-Pino-Casado R, Frías-Osuna A, Palomino-Moral PA, Ruzafa-Martínez M, Ramos-Morcillo AJ. Social support and subjective burden in caregivers of adults and older adults: A meta-analysis. PLoS One. 2018 Jan;13((1)):e0189874. doi: 10.1371/journal.pone.0189874. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Eriksen S, Helvik AS, Juvet LK, Skovdahl K, Førsund LH, Grov EK. The Experience of Relations in Persons with Dementia: A Systematic Meta-Synthesis. Dement Geriatr Cogn Disord. 2016;42((5-6)):342–68. doi: 10.1159/000452404. [DOI] [PubMed] [Google Scholar]
- 24.Bakker C, de Vugt ME, van Vliet D, Verhey FR, Pijnenburg YA, Vernooy-Dassen MJ, et al. The Use of Formal and Informal Care in Early Onset Dementia: Results From the NeedYD Study. Am J Geriatr Psychiatry. 2013 Jan;21:1. doi: 10.1016/j.jagp.2012.10.004. [DOI] [PubMed] [Google Scholar]
- 25.van Vliet D, de Vugt ME, Bakker C, Koopmans RT, Verhey FR. Impact of early onset dementia on caregivers: a review. Int J Geriatr Psychiatry. 2010 Nov;25((11)):1091–100. doi: 10.1002/gps.2439. [DOI] [PubMed] [Google Scholar]
- 26.Seitz DP, Knuff A, Prorok J, Le Clair K, Gill SS. Volunteers Adding Life in Dementia: A Case Series of Volunteer Visits to Reduce Behavioral Symptoms of Dementia in Long-Term Care. J Am Geriatr Soc. 2016 Jan;64((1)):220–1. doi: 10.1111/jgs.13904. [DOI] [PubMed] [Google Scholar]
- 27.THE ALZHEIMER CAFÉ A Guideline Manual for setting one up. [ http://pt.cvirtual.org/sites/default/files/site-uploads/experience/u15/Alzheimer%20Caf%C3%A9_Guia%20de%20implementaci%C3%B3n_EN.pdf]
- 28.Benjamini Y, Hochberg Y. Controlling the False Discovery Rate: A Practical and Powerful Approach to. Multiple Testing. J R Stat Soc B. 1995;57((1)):289–300. [Google Scholar]
- 29.Hurd MD, Martorell P, Delavande A, Mullen KJ, Langa KM. Monetary costs of dementia in the United States. N Engl J Med. 2013 Apr;368((14)):1326–34. doi: 10.1056/NEJMsa1204629. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Greenwood DE, Gordon C, Pavlou C, Bolton JV. Paradoxical and powerful: Volunteers' experiences of befriending people with dementia. Dementia. 2018 Oct;17((7)):821–39. doi: 10.1177/1471301216654848. [DOI] [PubMed] [Google Scholar]