Aim
Our aim was to explore how perceptions of weekly (as compared to monthly or unknown) baseline contact may be related to acceptability of “Connecting Today”, a personal contact intervention. Connecting Today was pilot tested in a recent study with persons living with mild to moderate dementia in long-term care homes. The overall feasibility and acceptability of Connecting Today will be reported in a forthcoming manuscript.
Design
This was a quantitative, descriptive, exploratory study, and secondary analysis of data that we collected during the time that participants in either the intervention or wait-list control groups received the Connecting Today intervention. Data were from 15 people living with mild to moderate dementia residing in two urban long-term care homes. All were offered six Connecting Today visits. Ethical approval was received from the Health Research Ethics Board – Health Panel at the University of Alberta (Pro00084244). This research was performed in accordance with the Declaration of Helsinki.
The Connecting Today Intervention
Development of Connecting Today has occurred in phases as per Medical Research Council recommendations for the development of complex interventions[29, 30]. In Phase 1, HMO completed: (i) scoping reviews to define antecedents and outcomes of older adults’ loneliness[1], and clarify the intervention’s active ingredient, activities, mode of delivery and dose[14]; (ii) a mixed methods study which supported acceptability of personal contact interventions according to health care providers and family members and friends of people living with dementia. This study highlighted the importance of flexible delivery, having a facilitator available to schedule and check-in during visits, to involve family members and friends where feasible, and to bring and set up telephone equipment as needed (n=25)[31]; and (iii) the present study is a secondary analysis of data that we collected as part of Phase 2 pilot testing to assess feasibility and acceptability of Connecting Today.
The essential component of the Connecting Today intervention is providing routine visits for a person living with dementia while they reside in long-term care. We told participants to do what they can to attend and engage in routine visits, and that we would be studying what is actually possible for people living with dementia in long-term care homes and their family members and friends. Some care home residents had someone that self-identified as a family member or friend and was willing to be their personal contact. If they did not have a contact, then the research assistant (RA) was assigned to complete the visits. Several activities were involved to implement routine visits: (1) The person with dementia (or their designated decision maker) chose a family member, friend or the RA to be the contact, and interacted with the same contact person for all visits, face-to-face or by phone. In our study, three residents chose their own visitor (which was the RA in all cases); the other contacts were selected by Designated Decision-Makers (DDMs). Seven of the 15 residents visited with an RA contact. We encouraged visits to occur face-to-face at least half of the time. (2) The RA worked with the friend/friend contact to schedule visits for a minimum of 30 minutes, once per week, for 6 weeks, and sent the personal contact an Alzheimer Society handout related to communication strategies used with people living with dementia. (3) The RA attended each visit as the contact or, in the case of a friend/friend contact, to help set-up for the visit (e.g., find a quiet location, set up the telephone as needed), and to complete a brief check-in after the first 10 minutes. (4) The resident and their contact determined what to talk about or do each visit.
Setting
The pilot study took place across two large long-term care homes (each >100 beds) situated in a mid-size urban setting in Alberta, Canada. The homes were similar in terms of their physical features (e.g., high proportion of shared rooms arranged along corridors) and philosophies of person-centred care.
Inclusion and Exclusion Criteria
Clinical staff identified potentially eligible participants (items 1-5 below). The RA then confirmed eligibility (item 6). Clinical staff were asked to complete the preliminary eligibility screen in January, April and July 2019 to identify new participants. The eligibility criteria were:
- Completed Resident Assessment Instrument (RAI) 2.0 full assessment [32] (to assess for eligibility, and necessary for the collection of demographic data).
- Age of 65 or older (RAI 2.0 item AA3a).
- Diagnosed with Alzheimer’s disease or other dementia (RAI 2.0 items I1r, I1v).
- Had possible mild-to-moderate cognitive impairment (RAI 2.0 Cognitive Performance Score 1-3) [33].
- Understood spoken English (based on clinical staff’s knowledge of the resident).
- Had a Mini Mental Status Examination score >12 (necessary to complete measures).
Recruitment and Informed Consent
In consultation with site managers, one or two units within each site were selected that included persons living with mild to moderate dementia. Care home staff reviewed the medical records (i.e., the Resident Assessment Instrument, RAI 2.0 data) of all the residents in the selected units to determine eligibility. These staff then approached all residents (or the DDM) that met the inclusion criteria to assess their interest in participating in the study. Clinical staff provided to the RA the names and contact information for those that were interested in learning more about the study. The RA contacted these individuals to explain the study in further detail, confirm eligibility, and obtain written (or audio-recorded verbal) consent from the person living with dementia (or their DDM). The RA also assessed assent of people living with dementia based on verbal and non-verbal indicators during each visit and data collection session. The sample size calculation identified that twenty participants were needed to estimate a proportion of 15% (which would be a common estimate of attrition, for example) within 9 points of accuracy with 90% confidence (Hertzog, 2008). To account for withdrawals and missing data, the pilot study investigators aimed to recruit a minimum of 30 participants for the pilot, but challenges with recruitment resulted in a smaller sample size (n=15). The small sample size is a study limitation.
Data Collection
Data were collected to assess participant demographics, perceptions of baseline contact, and indicators of intervention acceptability from March to November 2019.
Demographics. Demographic data were collected from residents’ clinical RAI 2.0 records two weeks before the intervention group received Connecting Today to measure variables that influence loneliness identified in a comprehensive review [1]. The variables were: age (RAI 2.0 item AA3a), sex (AA2), education (AB7), marital status (A5), hearing (C1), vision (D1), functional dependence (Activity of Daily Living Hierarchy Scale items - G1eA, G1hA, G1iA, & G1jA), depression (Depression Rating Scale items - E1a, E1d, E1f, E1h, E1i, E1l, & E1m), involvement in facility life (Index of Social Engagement items - F1a, F1b, F1c, F1d, F1e, & F1f), conflict with others (F2a, F2b, F2c, & F2d), absence of family member/friend contact (F2e), recent loss of loved one (F2f), family member/significant other involved in care planning (R1b & R1c), and number of medications (O1). Evidence supports the reliability (inter-rater and internal consistency) and validity (criterion, convergent and predictive) of the RAI 2.0 items [34]. Our research team confirmed the level of cognitive impairment by using the Mini Mental Status Examination (MMSE) [35]. The MMSE is widely used, and has evidence supporting its construct validity and test-retest and interrater reliability [35].
Baseline contact data. The perceptions of the amount and nature of current visits were collected as a component of the demographic information from participants living with dementia before receipt of Connecting Today (Additional file 1). Items were generated by the authors to explore whether Connecting Today offered something different from what the resident perceived that they already received (they were not intended to objectively measure actual contact). The stems were written in simple language, a limited set of response options were provided, and the response tree strategy was applied to enhance comprehension and limit cognitive burden [36]. The RA read each question and the response options aloud in face-to-face sessions. Participants were asked about who visits other than health care workers, and asked about specific types of visitors one at a time (participant responded yes or no). If a participant stated ‘yes’ to the type of visitor, they were asked how the visits with that person usually happen (in person, over the phone, videoconference, or other). Another item asked, in general, ‘how often do people visit’ (less than once per month, about once per month, about once per week, a few times per week, every day), and whether visits last as long as the person would like (yes or no). The co-author team, which includes gerontological researchers and people who have experience working directly with people living with dementia, reviewed the items and agreed that they were clear and relevant to the topic under study (face validity).
Acceptability data. Immediately following each Connecting Today visit, the RA asked the resident six items face-to-face to directly measure acceptability, defined as participants’ perceptions of appropriateness, effectiveness, and convenience of Connecting Today (Additional file 2). The items were informed by the Treatment Perception and Preference (TPP) measure, but adapted to fit with the particular treatment under assessment (i.e., Connecting Today), as per the developer guidelines (α > .85) [37]. To reduce cognitive burden, item stems were simplified and response options reduced from a 5-point to a 3-point Likert scale, and presented in a response-tree format [36]. Items asked about whether they enjoyed the visit, felt better after the visit, and found it easy to visit. If the participant responded ‘yes’ to the item, then the level of enjoyment, feeling better, or ease was assessed (a little, mostly, a lot).
Throughout the study, we used a study log to collect data related to retention, attrition, attendance at visits, and reasons that persons living with dementia or their DDMs gave for not consenting to participate in the study. These are indirect indicators of acceptability because withdrawal, non-attendance, and non-consent are associated with perceptions of the intervention; people who find an intervention unacceptable are less likely to agree to participate or to complete all intervention sessions [38].
Data Analysis
Descriptive statistics (means/SDs or medians and interquartile ranges for continuous variables and frequencies, medians, and modes for categorical variables) were used to summarize the demographic characteristics and perceptions of baseline contact. We dichotomized the variable measuring visit frequency to define two subgroups: (1) persons living with dementia who received weekly visits prior to the intervention and (2) persons living with dementia who received monthly visits or did not know their baseline contact prior to the intervention. Descriptive statistics were used to summarize acceptability data in the overall sample (means/SDs as sample size was 15) and the two subgroups (frequencies as the sample sizes were smaller). For analysis of attendance, attrition and missing data, the denominator was the total number in the subgroup at baseline. The proportion of missing data at each time point and the reasons for missing data were analyzed and considered carefully in the interpretation of the results. For acceptability data, we used complete case analysis. Conventional content analysis [39] was used to summarize the reasons for non-consent. These data were then converted to a quantitative, categorical format based on the identified reasons for non-consent. We used tables and bar charts to compare (not test) the results between the two subgroups for each visit (six visits in total). Between the groups, we noted differences in perceived acceptability, and withdrawal and non-attendance. We explored whether the reasons for non-consent were related to baseline contact. This led us to generate hypotheses about the influence of baseline contact on acceptability.