Quantitative Survey Results: Current Knowledge and Participation in Dementia Education
RCF staff returned 102 surveys. Ten RCFs returned an average of 10 surveys each. Determining the response rate is difficult for RCFs, as we relied on providers and facility managers to distribute the survey and did not confirm how many surveys were distributed. Responses were received from 30% of facilities who agreed to distribute the survey.
RCF staff respondents were most often female and in middle age groups. (Table
1) The majority (56%) worked in direct care or clinical care (24%) roles. The remainder worked in support services (15%), leadership and management (3%) or multiple (5%) roles. One in five of the respondents did not speak English as their first language. Although nearly half of respondents (46%) had less than five years experience, over one third of respondents (35%) were very experienced (having more than ten years experience). Twelve respondents (13% of those specifying gender) were male. Only five men answered the question regarding their first language, but 4 of those men said that English was not their first language. RCF respondents indicated that they cared for, on average, 52 residents. These data varied widely according to the facility type and the respondent's role. Respondents indicated that the majority of residents they cared for had either diagnosed or suspected dementia. On average, RCF Staff respondents reported that 70% of the residents they cared for had diagnosed or suspected dementia.
Table 1
Demographics of Survey Respondent, and Perceived Current Knowledge of Dementia and Preferences for Dementia Education
Gender Female | 83 (87) | 89 (45) |
Aged | | |
25 years and under | 5 (5) | 0 (0) |
26 to 35 years | 10 (10) | 18 (9) |
36 to 45 years | 37 (37) | 63 (32) |
46 to 55 years | 26 (26) | 65 (33) |
56 to 65 years | 22 (22) | 43 (22) |
66 years and over | 1 (1) | 11 (6) |
English as first language | 83 (82) | 157 (81) |
Self-rating of knowledge about dementia | | |
Very good | 38 (38) | 19 (10) |
Good | 49 (49) | 112 (57) |
Not good | 11 (11) | 49 (25) |
Not sure | 3 (3) | 16 (8) |
Have attended a dementia education program | 80 (78) | 86 (43) |
Rated that program | | |
Very good | 40 (51) | 19 (23) |
Good | 36 (46) | 57 (70) |
Not good or not sure | 2 (3) | 6 (7) |
Preferred delivery method | | |
Workshop | 61 (62) | 107 (57) |
Internet website | 2 (2) | 13 (7) |
Poster | 0 (0) | 0 (0) |
Booklet | 3 (3) | 12 (6) |
Workshop + Internet website, poster, or booklet | 29 (30) | 50 (27) |
Other | 3 (3) | 6 (3) |
Three quarters of RCF staff who responded had attended some training about dementia. (Table
1) Nearly all rated such educational programs as 'good' or 'very good'. Furthermore, most respondents rated their current knowledge about dementia as 'good'. RCF staff preferred education to be delivered as a workshop. About a third of respondents indicated a preference for multiple delivery methods, usually workshop and booklet. Visual learning materials for display in common areas ("posters") were chosen infrequently. Preference of RCF staff for electronic delivery (Internet website, or Internet and another methodology) was infrequent and similar in staff aged less than 46 (n = 5; 10%), and those aged 46 years and over (n = 4; 8%; Chi = 0.12, p = 0.73).
GPs from all Divisions responded to the survey, returning 202 surveys. Nineteen per cent of Perth GPs responded to the survey. Men and women were approximately evenly represented. (Table
1) One in five of the GPs who responded indicated that they did not speak English as their first language. Most GPs were older, and accordingly, most GPs who responded were very experienced (only 19% has less than 11 eleven years experience). More than half of the GP respondents (57%) did not currently care for people with dementia (PWD) living in residential care facilities. For those that did care for PWD living in RCF, the average case load was 21.
Just over half (57%) of the GPs who responded had not attended an educational program in dementia. (Table
1). While most (67%) said their level of knowledge regarding dementia was "very good" or "good", a surprisingly high percentage (25%) said that their knowledge was "not good", and a further 8% were uncertain. Workshops were the preferred method of delivery. Another popular option was workshop with booklet. Although a preference for Internet based delivery was more common than among RCF staff, the majority still preferred workshop based delivery. GPs aged 45 years and younger were more likely to indicate a preference for electronic delivery of education (Internet website, or Internet and another methodology, n = 26, 34%) compared to older GPs (n = 18, 17%, Chi = 7.25, p < 0.01). GPs who had not participated in an educational program were less likely to report "good" or very good' perceived knowledge (n = 58, 52%) compared to GPs who had participated in an educational program (n = 72, 86%, chi = 19.37, p < 0.001).
GPs who responded to the survey and were attending RCF tended to be older, and were more often male, than GPs not attending RCF (52% of male respondents reported attending RCF, compared with 32% of female respondents). Age specific proportions of GPs reporting caring for PWD in RCF were; 35 years and less 22%, 36–45 years 23%, 46–55 years 55% and 56 years and over 59%). GPs attending RCF were more likely to have attended an educational program and to perceive their knowledge as good or very good. (Table
2)
Table 2
Characteristics of GPs attending RCF compared with those not attending RCF
Male Gender | 57 (66%) | 51 (46%) | Chi = 8.443 Df = 1 | 0.004 |
Age | | | | |
<55 | 55 (63%) | 91 (81%) | Chi = 7.47 | 0.006 |
56+ | 32 (37%) | 22 (19%) | Df = 1 | |
English as first language | 69 (82%) | 88 (81%) | Chi = 0.062 Df = 1 | 0.803 |
Rate Knowledge | | | | |
VG or good | 68 (80%) | 63 (57%) | Chi = 11.73 | <0.001 |
NG or unsure | 17 (20%) | 48 (43%) | Df = 1 | |
Have Participated in Dementia | 53 (62%) | 33 (29%) | Chi = 20.483 | <0.001 |
Educational Program | | | Df = 1 | |
Qualitative Results: Perceived Educational Needs, and Educational Preferences
In addition to open ended survey questions, qualitative data were available from individual interviews with 6 family carers, 5 GPs and 4 RCF staff; focus groups of 4 family carers, 9 GPs and 7 RCF staff, two meetings of the ERG and feedback recorded from 10 facility managers. There were 1829 individual codes. Most codes (780; 43%) were from GPs. Similar quantities of data were available from family carers (483 codes; 26%) and RCF staff (482 codes; 26%). Remaining data were from the ERG and feedback recorded from facility managers (84 codes; 5%).
Participants felt that education relating to dementia and dementia care should be underpinned by a clear guiding philosophy. In this respect participants asserted the importance of individualised, respectful person centred care as the foundation of educational interventions. A person centred approach was seen as facilitating high quality dementia care. Participants emphasised that a flexible approach, with a focus on understanding the personal history of the resident, facilitated care delivery. Understanding dementia as a "journey" was felt to facilitate individualised, person centred care and indicated the importance of changing needs.
'I think it's a misnomer and I think it's a misleading issue too this whole thing of stages, it makes us think that there is, think in stages and there aren't, I mean people are just on a journey' (ERG member)
Although negative aspects of care in residential facilities were recognised, including the indignities and costs of dementia care in personal terms, the potential for learning was emphasised.
'It's taken you quite a while to learn what we learnt and we can still learn' (Family Carer)
Participants identified multiple barriers to improving dementia care, and to participation in dementia education. System factors, including the complexity of aged care, and workforce factors, were frequently emphasised by participants. System factors ranged from local matters, such as appointment and review systems to more universal issues such as the available funding. Participants viewed a range of work force issues as potential barriers, including medical workforce shortages and rapid turnover of staff in residential care facilities.
'But with the attrition of staff leaving the industry, so new people coming in and people moving on that you're constantly having this uphill battle of educating your staff' (RCF Staff member)
Time constraints, and lack of communication were frequently mentioned as potential barriers, for example when lack of communication allows incorrect expectations to persist. Conflicting interests between workforce groups were also cited as barriers to best practice.
'often the knowledge is there about which drugs you can use and how and you know to avoid too much medication but it's just that you either don't get told, or you can't do behavioural management – all they want is something to knock 'em out' (GP)
Several potential barriers were also identified as facilitators. These included improved communication, and better organisation.
'I think if you run your individual practice sensibly and you do regular comprehensive medical assessments then you can make it pay as well' (GP)
Participants accepted that most people delivering care are usually well intentioned. However participants emphasized the importance of leadership in facilitating provision of quality care. Management leadership was cited as a potential facilitator of cultural change in residential care.
'I think the biggest gap has come from the fact that quite often the care staff go and learn this information and they'll usually really enjoy it when they're at the course. When they come back into their environment, and it's set up in such a way that the culture's so hard to change because you almost need your higher management people to also understand that there needs to be the flexibility and all that kind of stuff as well' (RCF Staff member)
Data from all sources provided evidence of a perceived need for improved knowledge of aspects of dementia and dementia care.
'it's frustrating for me and it's frustrating for the residents if you don't have any knowledge' (RCF Staff member)
In addition to knowledge based education regarding dementia itself, GPs and care staff identified education relating to other common health problems in people with dementia as being important. These included mental health issues, skin problems, pain and continence. Other important considerations included palliative approaches to care and the legal framework for care. There was recurrent emphasis on the need for education regarding assessment and care planning, both at the level of care staff, and professional staff. Behaviours of concern were consistently cited as an area of particular importance. Communication, similarly, was frequently identified as being of central importance. Communication issues related to inter-professional communication, communication with people with dementia, and also communication with family carers. Finally there were pragmatic requests for resources and education to assist people with dementia, their families and workers in negotiating various aspects of the aged care system.
There was some variation in preferred educational content for families, GPs and RCF staff. For example, RCF staff identified a need for education in strategies to engage people with dementia, and support for leadership in aged care facilities, more often than GPs. GPs cited issues relating to medication management and legal issues more frequently than RCF staff.
Participants emphasized the diversity of needs among both residential care staff and general practitioners, suggesting flexible, modular approaches to educational delivery. The need for individualized approaches related not only to prior learning, but also to individual preferences for educational delivery. Some participants suggested that external contributors were important in determining the curriculum for educational interventions. Participants, both GPs and RCF staff, generally favoured small group, interactive learning with a focus on opportunities for mentoring.
'I think if you do give the people the opportunity to brainstorm solutions for their own problems they're usually very good. The care staff, particularly the ones who are really interested in finding answers to the problems themselves' (RCF Staff member)
Case based learning was suggested for both face to face group learning, and for electronic delivery. Participants emphasised the need to ensure educational interventions are sustainable.
Unifying themes were found consistently and frequently in the qualitative data from each participant group, and across the survey, interview and focus group data. Behaviours of concern, communication, dementia knowledge and person-centred care were important to all groups of respondents. The importance of organisational factors such as support for effective multidisciplinary teamwork, communication and leadership were also consistently emphasized. However variability in experiences and needs across the sector were also emphasised, highlighting the importance of an individualized approach and identifying local barriers and solutions.