Research in Gerontological Nursing

Focus on Methods Supplemental Data

Recruitment of Individuals With Dementia and Their Carers for Social Research: Lessons Learned From Nine Studies

Elizabeth Beattie, PhD, RN, FGSA, FAAN; Elaine Fielding, PhD; Maria O'Reilly, PhD, BOccThy, MOccThy; Deborah Brooks, MSc; Margaret MacAndrew, PhD, RN; Judy McCrow, PhD, RN

Abstract

Many health and social care research studies report difficulties recruiting sufficient numbers of participants, adding to time and money expenditures and potentially jeopardizing the generalizability of findings. The current article reports the effectiveness and resource requirements of recruitment strategies used in nine dementia-related studies conducted in Australia. Articles, notices, or advertisements in targeted specialist newsletters were the most cost-effective method of recruitment. The use of service providers to aid recruitment yielded mixed results, but was lengthy in terms of research time. Online and social media were low cost but not reliably effective in terms of recruitment potential. Despite using multiple strategies to maximize recruitment, significant challenges were encountered achieving the required sample sizes; in most cases these challenges resulted in delays in the recruitment phase. Implications for researchers in the fields of dementia and general social/health research are discussed.

[Res Gerontol Nurs. 2018; 11(3):119–128.]

Abstract

Many health and social care research studies report difficulties recruiting sufficient numbers of participants, adding to time and money expenditures and potentially jeopardizing the generalizability of findings. The current article reports the effectiveness and resource requirements of recruitment strategies used in nine dementia-related studies conducted in Australia. Articles, notices, or advertisements in targeted specialist newsletters were the most cost-effective method of recruitment. The use of service providers to aid recruitment yielded mixed results, but was lengthy in terms of research time. Online and social media were low cost but not reliably effective in terms of recruitment potential. Despite using multiple strategies to maximize recruitment, significant challenges were encountered achieving the required sample sizes; in most cases these challenges resulted in delays in the recruitment phase. Implications for researchers in the fields of dementia and general social/health research are discussed.

[Res Gerontol Nurs. 2018; 11(3):119–128.]

The rising numbers of individuals living with dementia worldwide will continue to put pressure on existing health and social care services, with the worldwide cost expected to cross the U.S. $1 trillion mark in 2018 (Wimo et al., 2017). Effective interventions are needed to reduce costs and improve quality of life for individuals living with dementia and their carers. To develop high-quality, evidence-based interventions, adequate samples of individuals with dementia and/or their family carers are needed for research studies, but obtaining such samples remains a challenge. Recruitment challenges not only add to the cost of research by increasing ethical procedures, extending fieldwork, and delaying subsequent research activities, but also affect the generalizability, and hence quality, of study findings (Kolanowski, Mulhall, Yevchak, Hill, & Fick, 2013; McMurdo et al., 2011; Tarlow & Mahoney, 2000). Although mention of recruitment might comprise only one or two lines of a published article, experienced researchers know the extensive time and effort required to recruit participants.

Barriers to Recruitment

In health research, recruitment of adequate sample sizes is an ongoing challenge, with recruitment of older individuals particularly problematic (McMurdo et al., 2011; Mody et al., 2008; Provencher, Mortenson, Tanguay-Garneau, Bélanger, & Dagenais, 2014). Age-related health problems such as reduced mobility, frailty, impaired vision and hearing, and chronic disease can make research participation difficult (Marcantonio et al., 2008; McMurdo et al., 2011; Mody et al., 2008). Social and cultural barriers such as distrust of research and researchers, language barriers, low literacy levels, and privacy concerns also exist (Mody et al., 2008).

Adding a diagnosis of dementia to inclusion criteria for a study can intensify recruitment challenges. Identifying potential participants presents the first obstacle to recruitment. Most individuals with dementia have not received a formal diagnosis, and research suggests that in high income countries, only 20% to 50% of individuals with dementia are formally diagnosed (Eichler et al., 2014; Prince, Bryce, & Ferri, 2011). This low percentage of formal diagnoses may be for various reasons, such as acceptance of symptoms as a normal part of aging, inability or reluctance of general practitioners to diagnose dementia in early stages, or stigma associated with receiving a diagnosis (Burgener et al., 2015; Prince et al., 2011). As a result, many potential participants are not identified until the disease has progressed beyond early stages, lessening time participants may be available for community studies (Pesonen, Remes, & Isola, 2011). Stringent inclusion/exclusion criteria (i.e., criteria based on cognitive test scores or formal diagnosis), although necessary for scientific rigor, can further exacerbate the challenge of achieving a representative sample of adequate size (Kolanowski et al., 2013). The frequent requirement for proxy informed consent for the individual with dementia can also be perceived by legally authorized proxies as an additional burden to involvement (Black, Wechsler, & Fogarty, 2013).

Even where a diagnosis does exist, accessing individuals with dementia in the community can be difficult. Australia, like many other countries, holds no current register of individuals with dementia, and no single central place (e.g., website) where individuals can access research study information. In cases in which registers have been used, as in approximately one half of U.S. Alzheimer's Disease Centers (ADCs), with databases ranging from 200 to >1,500 individuals, only six sites reported the registry as a “beneficial” recruitment tool. In addition, although all ADCs have a website, few reported it as a useful tool for clinical study recruitment (Markgraf et al., 2009). Most researchers rely on non-probability samples via health and social care professionals, support groups, and organizations. However, these “gatekeepers” have competing priorities for their time that are often inconsistent with research study priorities and timescales (Lowery, Warner, Cerga-Pashoja, Thune-Boyle, & Iliffe, 2011; Tsai et al., 2009). Gatekeepers may have attitudes toward research that could influence the willingness of potential participants to participate (Sullivan-Bolyai et al., 2007), perceive little immediate benefit of the research to participants or themselves (Tsai et al., 2009), view the research as inconsistent with the philosophy or goals of their organization, have agreements with specific universities and researchers, or have commitments to other studies trying to recruit from the same group of potential participants (Shatenstein, Kergoat, & Reid, 2008).

Studies that involve family carers of individuals with dementia may experience similar difficulties in recruitment. Individuals in family carer roles often experience significant stress, have multiple demands for their time, and may themselves be elderly, with coexisting health problems (Gaugler et al., 2010; Whitebird et al., 2011). Lack of time, lack of support, and limited access to respite care for the individual with dementia have all been identified as barriers to recruitment of family carers (Whitebird et al., 2011). In addition, family carers may not yet identify themselves with the term “carer,” the meaning of which varies with culture and ethnicity (Whitebird et al., 2011).

Carers may believe that benefits of participation are not worth the associated risks for the individual with dementia (Cohen-Mansfield, 2002; Dangour, Allen, Richards, Whitehouse, & Uauy, 2010; McKeown, Clarke, Ingleton, & Repper, 2010; Shatenstein et al., 2008). Although this belief appears to be more significant for pharmacological research or research involving invasive procedures, it may be a barrier to social research if participation imposes additional burdens, such as multiple visits or emotional or physical stress (Dibartolo & McCrone, 2003; Shatenstein et al., 2008). The recruitment of dyads, an individual with dementia and his/her carer, is a more complex process than recruiting one individual, yet is becoming increasingly common in dementia studies. Recruitment of dyads requires additional personnel time invested in recruitment (Szabo, Whitlach, Orsulic-Jeras, & Johnson, 2016) and may prolong the recruitment and follow-up process.

Facilitators of Recruitment

Prior research has also identified facilitators of recruitment. Broadening inclusion criteria and minimizing exclusion criteria can help widen the pool of potential participants as long as criteria fit with study aims (Dangour et al., 2010; Grill & Galvin, 2014; Mody et al., 2008; Shatenstein et al., 2008). For example, broadening criteria such as cognitive test scores, comorbidities, time since diagnosis, and living arrangements helped improve recruitment rates in some studies (Tsai et al., 2009); however, any broadening of criteria must always be balanced with research questions to be answered and must not jeopardize rigor. Formulating advisory boards that include individuals with early-stage dementia, family carers, community leaders and organizations, support group representatives, and health and social care professionals may be beneficial to informing study design and accessing potential participants (Mody et al., 2008; Tarlow & Mahoney, 2000). Gaining cooperation and commitment of service providers in the recruitment process has also proved to be a successful strategy (Dibartolo & McCrone, 2003; Gonzalez, Gardner, & Murasko, 2007; Kolanowski et al., 2013; Markgraf et al., 2009; Mody et al., 2008; Morrison, Winter, & Gitlin, 2016; Shatenstein et al., 2008; Tarlow & Mahoney, 2000). Other studies have used social marketing as a means of recruitment (e.g., via flyers, advertisements, articles in targeted media) with mixed results (Dibartolo & McCrone, 2003; Nichols et al., 2004; Whitebird et al., 2011; Yu, 2013). This approach is appealing but relies on exposure to the chosen media and self-selection by individuals with dementia and/or their carers.

Studies that minimize burden for gatekeepers, such as by coordinating research schedules with those of care professionals, may improve recruitment (Kolanowski et al., 2013; Mody et al., 2008). Lowering burden on participants (e.g., by paying for travel expenses or respite services) or providing incentives and tokens of appreciation, such as vouchers, refreshments, education programs, and tailored feedback, have also been used to improve recruitment and cooperation in dementia research studies (Austin-Wells, McDougall, & Becker, 2006; Kolanowski et al., 2013; Shatenstein et al., 2008; Tsai et al., 2009; Whitebird et al., 2011).

Purpose

As discussed, barriers to and facilitators of recruitment of older individuals have been previously identified in the literature, and a recent article directly compares three strategies for recruiting individuals with dementia and their carers in the community and the strategies' costs relative to yield (Morrison et al., 2016). However, few articles have evaluated effectiveness of recruitment strategies across multiple dementia-focused projects simultaneously. The current article adds to the discussion by analyzing and comparing recruitment strategies used within nine separate studies conducted by the same research team in Australia over a 7-year period (2009–2016). All studies discussed target participants in one of two possible combinations: (a) carers of an individual with dementia, or (b) carer/individual-with-dementia dyads.

Method

All nine studies in the current analysis sought to recruit community-dwelling individuals age ≥65 years with a diagnosis of dementia, and/or their primary carers (age ≥18 years), to participate in nonpharmacological-based health and social care research. In addition to these inclusion criteria, each study had criteria specific to its research questions. Participant involvement varied, ranging from a single online survey to serial interviews throughout a period of ≤18 months. Table 1 provides details of each project, as well as study numbers, which are referred to throughout the Results.

Nine Studies Included in Review of Recruitment StrategiesNine Studies Included in Review of Recruitment Strategies

Table 1:

Nine Studies Included in Review of Recruitment Strategies

Data were collected on specific strategies used for recruitment and the effectiveness of these strategies in terms of number of individuals who responded compared to sample size required. Estimates of research personnel hours expended were also made to determine cost-effectiveness. All recruiters were experienced in community-based dementia research and trained in the specific recruitment requirements for each study. In addition, little turnover in research staff occurred within any one project. All projects reported were approved by the ethics committees of the Queensland University of Technology and research governance committees of collaborating organizations (if relevant).

Results

All studies analyzed used multi-faceted recruitment approaches to maximize recruitment. These strategies have been categorized into three groups, primarily for illustrative purposes: Community/Health Care Outreach, Social Marketing, and Other (Table A, available in the online version of this article). Community/Health Care Outreach strategies focused on potential participants who were receiving dementia care from providers. Social Marketing strategies, although they may have reached individuals with existing health provider relationships, were primarily designed to reach members of the general public and family members who might alert carers and/or individuals with dementia they knew personally. Other strategies refer to strategies unique to a specific project, as well as the tactic of approaching individuals who had participated in prior studies. Also shown in Table A is the total elapsed time of recruitment in months or years. In addition, cost and effectiveness of each strategy is ranked relative to the budget and targeted recruitment for that specific study.

Recruitment strategies used, numbers recruited and estimated effectivenessRecruitment strategies used, numbers recruited and estimated effectivenessRecruitment strategies used, numbers recruited and estimated effectivenessRecruitment strategies used, numbers recruited and estimated effectivenessRecruitment strategies used, numbers recruited and estimated effectivenessRecruitment strategies used, numbers recruited and estimated effectivenessRecruitment strategies used, numbers recruited and estimated effectivenessRecruitment strategies used, numbers recruited and estimated effectivenessRecruitment strategies used, numbers recruited and estimated effectivenessRecruitment strategies used, numbers recruited and estimated effectiveness

Table A:

Recruitment strategies used, numbers recruited and estimated effectiveness

Community/Health Care Outreach

Partnership With Service Provider. Studies 1 and 8 developed direct partnerships with dementia service providers who contributed to the research design and made initial contact with potential participants. In Study 1, 4,748 letters were mailed across two Australian states, but only 57 dyads responded, of which 13 were eligible to participate. In Study 8, recruitment was initially via an “opt out” letter sent to clients with a residential respite booking, then subsequently via the admissions clerk at time of first inquiry to allow more time for pre-admission data collection. Slow recruitment progress with the provider required partnership with a second provider. As of July 2016, only 11 of the proposed 20 dyads had been recruited (of 30 approached), with two withdrawing prior to data collection.

Service Providers Assisted With Recruitment. For most of the described studies, dementia service providers and advocacy organizations were contacted to help access participants. This strategy yielded mixed results. Study 4 was most successful, recruiting 190 participants; however, other studies (e.g., Studies 7, 8) recruited only small participant numbers over long time periods, and in some instances (e.g., Studies 2, 3, 6), no participants were recruited by this method.

Direct Contact With Potential Participants. All studies (except Study 8, which relied on admission to a specific service) made direct contact with potential participants to provide information about the research. Direct contact was achieved by talking at events for carers, individuals with dementia, and service providers, and disseminating project information with researcher contact details. Making direct contact with participants appeared to be the least effective strategy in terms of recruitment, as it was time consuming for research staff and low yielding in terms of recruitment numbers (Table A).

Social Marketing

Flyers and Posters. Most studies developed flyers and posters containing project information and researcher contact details, disseminated via dementia care services, community and health care outreach activities, and public community areas. Similar to other strategies, using flyers and posters had mixed results, with Studies 2 and 4 being the most successful (recruiting 14 and 25 participants, respectively). Using flyers and posters required some up-front expenses and researcher time spent creating, printing, and distributing the flyers, but was somewhat less labor-intensive than the direct contact approach.

Mass Media. Some studies used radio and printed press with varying responses. Studies 1, 2, and 9 advertised via a community radio station, resulting in an increase in inquiries but recruiting no eligible participants. Studies 5 and 6 paid for advertisements in local newspapers, with no impact on recruitment. Conversely, one quarter of participants in Study 4 (n = 87) and Study 9 (n = 8) were recruited following an article published in a specialist newsletter, such as that produced by Alzheimer's Australia (now Dementia Australia).

Online Marketing. Webpages, Facebook®, and Twitter® accounts of key dementia service providers, members of the research team, and the research center were used by more recent projects (Studies 7 and 9). These mediums gave an opportunity to reach a national audience and provide a direct link to researcher information and online surveys. However, despite the potential reach and low cost, few participants were recruited.

Other Strategies

Minimize Participant Burden. Some studies altered initial data collection strategies to allow multiple options for the way in which data could be collected. For example, Study 7 added the option of a telephone interview or online survey after difficulty with and considerable time elapsing while trying to recruit adequate numbers for focus groups; this new strategy allowed the project to reach its recruitment target.

Provision of Incentive to Participate. Few studies offered incentives to participate. The incentives that were offered included taxi vouchers to attend focus groups (Study 7) and the potential personal benefit of receiving an intervention (Studies 5 and 8). One more recent project led by current authors Beattie and MacAndrew (data not shown) used a gift voucher draw; however, its specific effect on recruitment was unknown.

Referral From Other Studies and Past Participants. Another recruitment strategy involved the research team maintaining a list of carers who had contacted the team regarding research activities at the center or participated in prior studies and given permission to be contacted for future research. Study 9 recruited two participants using this strategy.

Discussion

The nine studies described in the current article demonstrate the significant challenges faced by researchers trying to recruit participants with dementia and their carers in community-based health and social research. Six studies analyzed achieved adequate sample sizes for purposes of the study, given that most were either pilot studies or studies of intentionally small size or length. Study 6 was stopped after it was determined that few potential participants met the inclusion criteria due to unanticipatedly high prescription of vitamin D in the relevant age group. Study 8, despite having disappointing recruitment numbers for an attempted pilot randomized controlled trial, yielded a useful set of knowledge translation products made available to carers and long-term care facilities for use in, or provision of, residential respite care (O'Reilly, Beattie, Neville, Fielding, & MacAndrew, 2016a,b).

In analyzing the nine studies, the current researchers learned about conducting successful recruitment campaigns in community-based populations of individuals with dementia and/or their carers (Table 2). Restrictive inclusion criteria may make recruitment difficult but could be necessary for conducting a robust study on a particular topic. However, recruitment success could be gained by broadening inclusion criteria (Fielding, McMaster, et al., 2016; Shatenstein et al., 2008). Accessing participants from only a limited geographical area can cause sample issues, which can be addressed by using additional research modes or research teams in other areas (Beattie et al., 2015; Fielding, Beattie, O'Reilly, & McMaster, 2016). When limited access to participants or gatekeepers inhibits recruitment, involving organizations serving the target population and gaining trust and commitment of key individuals could open doors (Dibartolo & McCrone, 2003; Gonzalez et al., 2007; Kolanowski et al., 2013; Markgraf et al., 2009; Mody et al., 2008; Shatenstein et al., 2008; Tarlow & Mahoney, 2000).

Lessons Learned and Recruitment Recommendations for Researchers

Table 2:

Lessons Learned and Recruitment Recommendations for Researchers

Time or emotional burden for participants can be problematic to recruitment, especially when a proxy decision maker is involved. Incentives may be effective when participants do not receive benefits from the study. However, use of incentives has traditionally been viewed negatively by ethics committees because of the risk of exerting undue influence on potential participants (National Health and Medical Research Council, Australian Research Council, & Australian Vice-Chancellors' Committee, 2007). Research participation takes time and effort, and carers of individuals with dementia are a particularly time-poor group (Schulz & Martire, 2004). Acknowledging their contribution through incentives, however small, may increase chances of participation. In addition, modifications to protocol, such as reducing the number of instruments, may be possible without jeopardizing quality (Beattie, McCrow, Dyce, Fielding, & Isenring, 2014; Mody et al., 2008). Involvement of consumers (i.e., carers, individuals with early dementia) on study advisory panels or as investigators can enhance understanding of issues hampering recruitment. Participants may be more likely to enroll if they view the research as necessary and relevant. It is thus vital for researchers to collaborate with consumer groups to ensure congruence with current issues of concern.

The main lesson learned in comparing the nine studies is that no specific strategy is the best; rather, the best strategy or strategies for a specific study depend on the context. For example, the two studies analyzed with the most successful recruitment used different strategies; one (Study 4) involved a labor-intensive, and hence costly, recruitment process but with minimal participant burden and broad inclusion criteria, whereas the other (Study 5) provided an intensive intervention to a group who felt underserviced (Dowling et al., 2014) and required only a small sample size. Some strategies used had little impact in the studies analyzed, such as asking general practitioners for assistance; connecting directly with potential participants (e.g., at support meetings or conferences); and using mass media (e.g., radio interviews, newspaper advertisements). However, articles in newsletters targeted specifically for individuals with dementia and their carers yielded positive results for two studies, had national reach, and were cost-effective. Flyers and posters left in dementia services were also cheap and effective in two other studies.

Use of online and social media, such as specifically targeted websites, e-newsletters, GoogleTM Ads, Facebook, or Twitter, is a relatively new strategy for recruitment and appealing due to low cost, national reach, and direct links to study information and online surveys (O'Dwyer & Moyle, 2014). Few participants in the studies analyzed were recruited using these mediums; however, because these approaches had success and were less expensive than paid advertising, they are promising strategies for future recruitment of individuals with dementia and their carers. Further evaluation of such methods will be required as they gain traction.

Ultimately, findings suggest that each recruitment strategy yields a different response depending on context. Thus, reliance on a single strategy may be insufficient for successful recruitment to occur. Several authors have emphasized need for careful planning before recruitment commences (Markgraf et al., 2009; McMurdo et al., 2011). The current authors concur that researchers need to develop detailed recruitment plans incorporating multiple avenues for recruitment and allowing sufficient time for desired sample size to be reached. Core to any recruitment strategy is knowledge, experience, and training in recruitment techniques and skills of the research staff, as well as familiarity with working with individuals with dementia and their carers.

Conclusion

Ongoing health and social research involving individuals with dementia and their carers is vital for improving quality of life. To achieve strong research outcomes, participation of individuals within the population of concern is required. Timely recruitment of sufficient participant numbers remains one of the greatest challenges to researchers in this field. Time and cost requirements for the recruitment phase of the research process are often underestimated, and the initially desired sample sizes are often too large to achieve. When planning social research, particularly research involving individuals with dementia, it is important that challenges are acknowledged and cost-effective strategies used. In the development of more effective recruitment strategies, it would be helpful if research publications in the area contained more thorough and detailed descriptions of their own recruitment processes.

Currently, there is no Australian registry of individuals living with dementia from which researchers can access interested potential participants. Registries that do exist are focused on recruitment for early detection, improved treatment, and dementia prevention rather than on improvement of daily care, quality of life, and social aspects of living with dementia. Importantly, volunteer registries that can be joined by individuals who are worried about cognitive decline, have been diagnosed with dementia, are carers, or are interested in participating in research have proved useful and successful in other countries; for example, Join Dementia UK (access http://www.joindementiaresearch.nihr.ac.uk) and the U.S. National Alzheimer's Prevention Registry (access https://www.nia.nih.gov/alzheimers/clinical-trials/alzheimers-prevention-registry). Access to registries for pilot work, clinical trials, and cohort studies focused in the psychosocial domain could assist a new generation of dementia research with faster recruitment and more accurate information about diagnostic status and relevant biomarkers in psychosocial research.

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  • O'Reilly, M., Beattie, E., Neville, C., Fielding, E. & MacAndrew, M. (2016a). Residential respite care transitions: Resources for family carers. Retrieved from http://dementiakt.com.au/resource/residential-respite-care-transitions-famcarers
  • O'Reilly, M., Beattie, E., Neville, C., Fielding, E. & MacAndrew, M. (2016b). Residential respite care transitions: Resources for residential aged care facilities. Retrieved from http://dementiakt.com.au/resource/residential-respite-care-transitions-racf
  • O'Reilly, M., Fielding, E. & Beattie, E. (2014, December19). Getting the most out of respite care: Respite care guide. Retrieved from http://dementiakt.com.au/resource/respitecareguide
  • O'Reilly, M., Fielding, E., MacAndrew, M. & Beattie, E. (2016). A person-centred model of residential respite care transition support: The Transition Support-Person Centred Care Program for family caregivers and care recipients with dementia. Canberra, Australia: Australian Department of Social Services.
  • Pesonen, H.M., Remes, A.M. & Isola, A. (2011). Ethical aspects of researching subjective experiences in early-stage dementia. Nursing Ethics, 18, 651–661. doi:10.1177/0969733011408046 [CrossRef]
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  • Shatenstein, B., Kergoat, M.J. & Reid, I. (2008). Issues in recruitment, retention, and data collection in a longitudinal nutrition study of community-dwelling older adults with early-stage Alzheimer's dementia. Journal of Applied Gerontology, 27, 267–285. doi:10.1177/0733464807311655 [CrossRef]
  • Sullivan-Bolyai, S., Bova, C., Deatrick, J.A., Knafl, K., Grey, M., Leung, K. & Trudeau, A. (2007). Barriers and strategies for recruiting study participants in clinical settings. Western Journal of Nursing Research, 29, 486–500. doi:10.1177/0193945907299658 [CrossRef]
  • Szabo, S.M., Whitlach, C.J., Orsulic-Jeras, S. & Johnson, J.D. (2016). Recruitment challenges and strategies: Lessons learned from an early-stage dyadic intervention (innovative practice). Dementia. Advance online publication. doi:10.1177/1471301216659608 [CrossRef]
  • Tarlow, B.A. & Mahoney, D.F. (2000). The cost of recruiting Alzheimer's disease caregivers for research. Journal of Aging & Health, 12, 490–510. doi:10.1177/089826430001200403 [CrossRef]
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Nine Studies Included in Review of Recruitment Strategies

Study and Aims (Location)Study-Specific Inclusion CriteriaParticipant InvolvementDissemination to Date
1. Stigma in Veterans (2010–2011) To explore stigma associated with having a diagnosis of dementia for Veterans with dementia and their carers. (National)

Dyads (i.e., individual with dementia and his/her carer)

Male Veteran

MMSE score ≥ 18

Four 1- to 2-hour interviews conducted at participants' homes every 6 months for 2 years

Project discontinued at request of funding agency; Beattie, Burgener, & Horner, (2010)
2. Community Stigma (2011–2014) To explore stigma associated with having a diagnosis of dementia for individuals with dementia and their carers. (Perth and Brisbane areas)

Dyads

MMSE score ≥ 18

Four 1 to 2 hour interviews conducted at participants' homes every 6 m onths for 2 years

Beattie, Horner, Moyle, Burgener, & Wellman (2013)
3. Community Nutrition Study (2009–2012) To investigate the nutritional status of individuals with dementia being cared for at home and their carers. (Brisbane area)

Dyads

MMSE score ≥ 18

Carer prepares ≥10 meals per week

Carer is able to complete food/fluid diary

One 1- to 2-hour interview/data collection conducted at participants' homes

Body weight and nutritional assessment

Carer completes a food and fluid diary (including volume and weight of food items consumed) over 3 non-consecutive days

Participant must keep packaging from all packaged foods

Beattie, McCrow, Dyce, Fielding, & Isenring (2014)
4. Respite for Carers Survey (2010–2012) To explore carers' experiences of respite use and non-use. (National)

Carers of community-dwelling individuals with dementia

One survey taken online (45 to 60 minutes) or by telephone interview (60 minutes)

Fielding, Beattie, Gresham, Neville, & Readford (2012); Fielding, Beattie, Readford, Neville, & Gresham (2012); Neville, Beattie, Fielding, & MacAndrew (2015); KT product: O'Reilly, Fielding, & Beattie (2014)
5. Life Enhancing Activities for Carers (LEAF) (2011–2012) To evaluate effectiveness of an intervention aimed at reducing carer burden and depression. (National)

Carers of individuals with a confirmed diagnosis of FTD

Access to internet

Five one-on-one video conferences of 60 minutes and final review session at Week 6 (30 minutes)

Measurements (telephone interview) at three time points: baseline (45 minutes); immediately after intervention (30 to 40 minutes); and 1-month follow up (30 to 40 minutes)

Pilot study; larger study not funded; Beattie, Dowling, et al. (2010)
6. Vitamin D deficits in community-dwelling individuals with dementia and their carers (2011–2012) To explore vitamin D levels in individuals with dementia and their carer. (Brisbane area)

Care dyads

Not currently taking vitamin D supplements

One 45-minute home visit for completion of questionnaires

Blood samples

Completion of sun exposure

Diet diaries (data from both members of dyad)

Study curtailed due to nil enrollment; Beattie, Kimlin, & O'Reilly (2010)
7. Carers' strategies for managing wandering in the community (2012–2014) To explore strategies used by carers to manage wandering in the community. (National)

Carers of individuals with dementia who wander

Still living at home or recently moved into care

Method 1: focus group (1 to 2 hours)

Method 2: telephone interview (60 minutes)

Method 3: online survey (60 minutes)

Manuscript under review; Beattie et al. (2011)
8. Residential Respite Transition Project (2012–2014) Pilot RCT to investigate the effectiveness of an intervention to assist the transition between home and residential respite care, for the individual with dementia and his/her carer. (Wider Brisbane area)

Care dyads

Current respite booking at participating facility

Data collection via interview and paper/online survey: pre-respite, during (individual with dementia only), immediate post-respite, 3 months post-respite

1 to 2 hours per data collection point

O'Reilly, Fielding, MacAndrew, & Beattie, (2016); KT product: O'Reilly, Beattie, Neville, Fielding, & MacAndrew (2016a,b)
9. Residential Placement Transitions (2013–2014) To explore the experience of carers placing a relative with dementia in permanent care. (National)

Carers

Individual with dementia who is on waiting list to enter permanent residential care, who entered residential care in past 3 months, or who moved into care in past 1 year

Method 1: Two telephone calls or online surveys, 1 month apart (30 minutes each)

Method 2: One telephone survey (30 to 60 minutes)

Fielding, McMaster, et al. (2016); KT product: Brooks, Fielding, MacAndrew, & Jeavons (2016)

Lessons Learned and Recruitment Recommendations for Researchers

Lessons LearnedRecommendations
1. Restrictive inclusion criteria may limit potential participant pool.

Balance broadening criteria with retaining robust criteria

Consider multiple, related populations

Consider accessing registry populations

2. Using a limited geographical area may limit sample variability and representativeness.

Consider non-face-to-face methods, such as phone interviews and online surveys

Involve research teams from other areas

3. Limited access to population of interest can make recruitment difficult.

Involve organizations and professionals serving the target population

Consider accessing registry cohort

4. Gatekeepers can support or jeopardize effective recruitment.

Gain trust and commitment from relevant gatekeepers

Help gatekeepers understand the purpose and benefits of research participation

Avoid providers with limited readiness to negotiate and/or with different values about the importance of research to improving practice

Offer incentives to participate or assistance in recruitment process, such as pre-written e-mails, letters, or flyers

5. Where proxy (surrogate) decision makers perceive participant burden as high relative to benefit, they may be reluctant to involve the individual with dementia.

Minimize burden without jeopardizing quality

Provide incentives

6. The involvement of carers and individuals living with early dementia on study advisory panels or as investigators can enhance recruitment efforts.

Work with consumer advocates to involve several carers and individuals from the target population

Educate consumer advocates about the study protocol

Use advocates' recruitment suggestions and train them to recruit where appropriate

7. Recruitment is influenced by the idiosyncratic nature of individual study protocols so multifaceted, flexible options are essential.

Develop a recruitment plan including target deadlines

Retain recruitment momentum

Carefully monitor the effort and yield of selected strategies and be willing to change strategies in a timely way

Recruitment strategies used, numbers recruited and estimated effectiveness

Community/Health Care OutreachSocial MarketingOther
Recruited/sample required [Recruitment length]Partner with trusted service providerTrusted service provider assist with recruitmentResearchers connect w/potential participantsAdvertising through flyers and postersUse of mass media e.g. radio programs, newspaper advert.Online marketingEnsuring participant convenienceIncentive to participateReferral from other studies/past participants
1. DVA Stigma N=13/80 [1 year]4,748 letters of invitation sent via DVA 600 follow up letters from CMO of DVA sent 63 calls received; N=13 recruited.Many not eligible as the person with dementia was not the veteranPosters and flyers displayed in waiting rooms of 15 DVA funded private hospitals nationally 13 calls received; none eligible.1 × radio interview with small community based University station 6 calls received after radio interview; none eligible.2 × advertisementsplaced on DVA support website for families of veterans 2 calls received; neither eligible.
Cost$$$$$$$
Effectiveness*NilNilNi
2. Stigma in the community N=26/40 [1 year]

RACF information session.

Postcards and brochures to dementia and respite organisations (n=588); pharmacies (n=210)

Postcards dementia lecture

N = 15 recruited. (most from 2 above)

Letters to GPs/memory clinic requesting referral to study.

Project info sent to state dementiaclinical network.

One response. N = 1 recruited.
Presentation given at carers support meeting ×2 Twelve responses N = 6 recruited.Press release, radio announcement with small communityUniversity radio station; radio advertisement (paid) Six calls following radio presentation; four calls following advertisement. N = 2 recruited.Carers group online bulletin N = 1 recruited.Word of mouth N=1 recruited.
Cost$$$$$$$$$$Nil
Effectiveness*********
3. Nutrition Study N=26/30 [2 years]6 HREC approvals + four letters of support from dementia service organisations10 dementia service providers help with recruitment. Ongoing contact with organisations on six monthly basis N = 25 dyads recruited.Attended AA conference, made presentations to organisations × 7 N = 1 dyad recruited.Local newspaper advertisement None recruited.Advertisement in AA online newsletter None recruited.
Cost$$$$$$$$
Effectiveness****NilNil
4. Respite for Carers Survey N=336/200 [8 months]Commonwealth Centrelink/Respite Services provided contact details of national offices (N=99) 2 × RA for 1 day per week for 2 months71/99 dementia respite organisations agreed to promote study by dissemination of postcards and display of posters N = 190 recruited.Presentation about survey at Dementia Respite Summit – 6 additional service providers identified to help with recruitment; AA conference – information booth N = 4 (directly attributable)Libraries (postcards at 31 libraries) and Seniors Groups × 10 targeted in Brisbane area Health organisations N = 19 recruited; Community organisations N = 6 recruited.Article printed in AA publication, Dementia News N = 87 recruited.Article in online AA newsletter N = 1 (directly attributed)N = 9 possible – family referralOption of data collection via online survey or telephone interview
Cost$$$$$$$$$
Effectiveness***********
5. Life Enhancing Activities for carers (LEAF) (N=9/10) [5 months]Worked closely with FRONTIER: FTD research organisationLetters of invitation to carers via FRONTIER (2 rounds of letters). 2 × memory clinics in Brisbane also assisted FRONTIER--13 responses; N = 9 recruited.Memory clinic—one response; N = 1 recruited.Flyers distributed at dementia conference ×1 No responsesLocal newspaper advertisement. Included in press release for dementia awareness week No responsesIntervention only study – possible participant benefitn=1 referral and ultimate recruitment from another study
Cost$$$$$$$
Effectiveness***NilNil*
6. Vitamin D deficits in community dwelling people with dementia and their carers(N=0/50 dyads) [8 months]Early contact with a large retirement village and a memory clinicRetirement village and memory clinic sent invitations to residents Some potential participants found but all ineligible due to Vitamin D supplementsFliers distributed at dementia conference ×1 No responseLocal newspaper advertisement Included in press release for dementia awareness week No response
Cost$$$$$
EffectivenessNilNilNil
7. Carers' strategies for managing wandering in the community (N=19/30) [2.5 years]Letter of support from 5 care services and Alzheimer's Australia 1–2 hours for 1 RA per week has been dedicated to recruitmentCare services × 5 and AA sent information to care providers re focus groups – agreed to disseminate to carers One focus group organized; N = 6 recruited;Telephone interviews N = 7 recruited.Spoke at dementia care providers meeting × 5; information booth at Dementia Walk Four potential participants; N = 1 recruited.90 postcards and 22 posters to dementia service providers (10) Postcards displayed at booth at dementia seminar × 3 No responses.Article in AA and OzCare online newsletter No responses.Placed link to online survey on AA, DCRC, OzCare websites and Facebook sites 370 visited survey; 6 not eligible; N = 8 completed online;N = 2 completed on telephoneThree modes of participation offered to provide flexibility for participants focus groups, telephone interview and online survey.Taxi voucher for focus group participants and afternoon tea providedWhile recruiting for other DCRC projects, if carer of person who wanders identified, details of project passed on Nil recruited
Cost$$$$$$$$$$$$$
Effectiveness****NilNil*****Nil
8. Residential Respite Transitions Project (N=5/20 dyads) [Two periods over 3 years]Partnership with ×2 Aged Care Facilities providing residential respite for people with dementiaAll recruitment through facility admissions clerk; first organisation cut off permission to recruit. Second organisation approached but no facilities agreed to participate; more organisations being pursued. N = 5 recruited.Visits ×7 to organisational management and participating facilities to discuss their involvement and promote project. Weekly phone call to admissions officer. None recruited.Originally planned to gather all data via interview. To reduce carer burden, portions of questionnaires could be completed by hard copy or online survey. None recruited.
Cost$$$$$$$
Effectiveness*NilNil
9. Residential placement transitions (N=31/100) [6 months]Aged Care Facilities involved in disseminating information about the project 52 hours between 4 research assistantsDirect contact with RACF ×15 (with 50–60 facilities), 2x ACAT teams N = 1 recruited.Postcards and posters disseminated through RACFs, ACAT and GP surgery GP surgery— N = 2 recruited.University media, 2 radio interviews, 2 newspaper articles N = 12 recruited;(Newsletters: 8; newspaper article: 4)Facebook, Twitter, LinkedIn, carer groups. Paid Facebook advertising, Senior Health advertisement Mailing/email lists/newsletters – University and dementia organisations N = 3 recruited;(Dementia research website: 2; Facebook: 1)Inclusion criteria broadened to include all carers of people with dementia (PwD) who had placed their PwD into care N =10 further participants recruited.Carers who had previously participated in projects and had indicated that they were happy to participate again were contacted N = 2 recruited.
Cost$$$$$$$$$$$
Effectiveness********
Authors

Dr. Beattie is Professor of Aged and Dementia Care and Queensland Director, Dementia Training Australia and Director, Dr. Fielding is Senior Research Fellow and Research Manager, Dr. O'Reilly is Visiting Fellow, and Ms. Brooks is Senior Research Assistant, Dementia Centre for Research Collaboration, and Dr. MacAndrew is Lecturer, and Dr. McCrow is Visiting Fellow, School of Nursing, Queensland University of Technology, Brisbane, Queensland, Australia. Dr. O'Reilly is also Senior Lecturer, Occupational Therapy, School of Health, Medical and Applied Sciences, CQUniversity, Bundaberg, Queensland, Australia.

The authors have disclosed no potential conflicts of interest, financial or otherwise. The authors thank the many individuals living with dementia and their carers who participated in the nine studies, as well as the research assistants, organizations, and individuals who helped in the recruitment process. The authors thank David Wellman, the Project Coordinator of two studies who conducted the initial organization and analysis of data for the current article. The authors also recognize the contributions of the investigators on studies referenced: Gerard Bryne, Sandy Burgener, Glenna Dowling, Meredith Gresham, Barbara Horner, Elizabeth Isenring, Judith Moskowitz, Wendy Moyle, Christine Neville, Nancy Pachana, Karen Rose, and Lynn Woods.

Address correspondence to Elaine Fielding, PhD, Senior Research Fellow and Research Manager, 6th Floor, N. Block, Victoria Park Road, Queensland University of Technology, Kelvin Grove, 4059, Queensland, Australia; e-mail: elaine.fielding@qut.edu.au.

Received: October 23, 2017
Accepted: January 15, 2018
Posted Online: April 11, 2018

10.3928/19404921-20180308-01

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