None listed
Conditions
Brief summary
Reading for Pleasure: The benefits of a dementia-friendly book club. Reading is an important leisure activity with multiple health benefits, and the elderly are known to spend more time reading than any other age group. People living with dementia may find book reading difficult to access and enjoy. We plan to conduct a full RCT testing whether participating in a shared reading group, using dementia-friendly books, provides psycho-social benefits. The proposed primary outcome is quality of life (as measured by Resident QoL –AD, self and proxy). Secondary outcome measures are effects on thriving (TOPAS, self and proxy), Theory of Mind (Adapted RMET), cognition (ACE-III), mood (GDS), and behaviour (NPI). The control participants will engage in activities as usual at the facility. The study will include participants with both moderate and severe dementia and their family carer. This pilot tests the feasibility of our study design. The outcomes of the pilot study will be an assessment of whether or not the assessment process as proposed is too burdensome in this populations; estimates of effect size and variance of Quality of life measures; phenomenological analysis of recorded book club sessions.
Interventions
Dementia-friendly book clubs within residential aged care facility (RACF).
In week 1, all participants (intervention and control) will receive the baseline evaluation, and the intervention will begin. The Assessor will be blinded to treatment allocation, and will be either a Psychiatry Registrar or a Psychiatrist. Baseline evaluation includes the following measures: Quality of Life (Resident QoL-AD self-report and proxy); "Thriving"(how well the individual has adjusted to life at the RACF (TOPA
Dementia-friendly book clubs within residential aged care facility (RACF). In week 1, all participants (intervention and control) will receive the baseline evaluation, and the intervention will begin. The Assessor will be blinded to treatment allocation, and will be either a Psychiatry Registrar or a Psychiatrist. Baseline evaluation includes the following measures: Quality of Life (Resident QoL-AD self-report and proxy); "Thriving"(how well the individual has adjusted to life at the RACF (TOPAS and TOPAS-proxy) ; Theory of Mind via the Eyes/Faces Test (EFT); Assessment of Cognitive Function (ACE-III); depression (GDS-SF); and any changes in behaviour (NPI). During weeks 2 – 8, facility staff will conduct the book clubs (2/week, 45 mins each), and patient carers will provide support to the patients to encourage them to read the books between meetings, attend and participate in the book clubs. All participants with dementia will have their own books to read. The books are dementia-friendly books, written by the researchers (Drs Rimkeit and Claridge, see www.dovetalepress.com) after initial research. One book will be read each week. The book clubs will involve reading these books, and discussing them with the participants. Only the participants with dementia will attend the book clubs. In week 9, the final assessment, a repeat of the baseline assessment for all participants (intervention and control), will be done, again by a blinded assessor who is either a Psychiatrist or a Psychiatry Registrar. Frequency of attendance at the book clubs will be noted for each participant by the book club facilitator.
Sponsors
Bupa Care Services New Zealand Ltd
Study design
Allocation
Randomised controlled trial
Intervention model
Parallel
Primary purpose
Treatment
Masking
Blinded (masking used) (Outcomes Assessor)
Eligibility
Sex/Gender
All
Age
55 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Inclusion Criteria 1 All participants will have a medical diagnosis of Dementia, or will be a carer for someone diagnosed with dementia. In addition, the Bupa facility staff will attest that, in their latest InterRAI ( InterRAI Long-Term Care Facility (LTCF) Assessment Form Version 9.3, copyrighted), the participant with dementia has a recorded diagnosis of Alzheimer’s disease or Dementia other than Alzheimer’s (section I: Disease Diagnosis). Participants will be recruited as a dyad of carer and person with dementia (PWD). 2 Participants with dementia will be recruited from those living in rest home or hospital level care (with likely mild-moderate dementia) and those living in secure dementia units (likely moderate – severe dementia). Participants with dementia will reside at the Bupa Care Home. The Carer Participants can reside outside of the Care Home, in community, or at the Bupa Care Home. 3 Participants will be recruited by invitation by the facility manager, or his/her surrogate, with referral to a poster giving information about the book club. 4 All participants with dementia will score 0, 1 or 2 on all parts of Section D: Communication and vison of the InterRAI Long-Term Care Facility (LTCF) Assessment Form Version 9.3, copyrighted. 5 All participants with dementia will be recorded as NOT having any problems with verbal abuse, physical abuse or socially disruptive behaviour in their InterRAI (Section E.3, parts b, c, and d). 6 “With patient autonomy being a guiding principle in health care law, it is important that the test that sets the limit for capacity is at a level that allows most people to make their own decisions about treatment”. (Gunn, 1994)) . In consultation with HDEC, we have carefully designed our consent/assent process to respect this autonomy principle. As per The HDC Code of Health and Disability Services Consumers' Rights Regulation 1996, all participants will be deemed to have the capacity to give informed, written consent or assent (even if they have been deemed incompetent within PPPR legislation). This written consent/assent will be sought only after they have had time to fully read the Information Sheet, speak to family members (who have been provided with a Family Information Sheet and Carer Views on their Relative’s Participation in the study), and had an interview with the clinical researchers (Drs Rimkeit and Astika), so that their questions about the study are fully answered. In this consent/assent process, we will ensure that those who agree to participate do so because 1) it is their personal, informed choice to participate, and 2) they believe it is in their best interest to participate. 7 The carer-participant for each PWD will receive their own letter of information for the role they will play in the study and interview with the researchers, and will sign their own consent form.
Exclusion criteria
Exclusion Criteria 1. Potential participants with comorbidities which would preclude them from participating in the book club for seven weeks will be excluded; this will be assessed by the facility manager or his/her surrogate. 2. Potential participants who score 3 or 4 on any parts of Section D: Communication and vision of the InterRAI Long-Term Care Facility (LTCF) Assessment Form Version 9.1, copyrighted will be excluded from the trial. 3. All potential participants with dementia who are recorded as exhibiting any verbal abuse, physical abuse or socially disruptive behaviour in their InterRAI (Section E.3, parts b, c, or d) will be excluded from the study.
Outcome results
None listed