Better living with non‐memory led dementia: results from a pilot randomised clinical trial of an online training programme for carers of people with PCA, PPA and bvFTD
Journal article
Gonzalez, Aida, John, Amber, Brotherhood, Emilie V, Camic, Paul, McKee‐Jackson, Roberta, Melville, Mel, Sullivan, Mary Pat, Tudor‐Edwards, Rhiannon, Windle, Gill, Crutch, Sebastian J, Hoare, Zoe, Stott, Joshua and Impact, Rare Dementia Support 2023. Better living with non‐memory led dementia: results from a pilot randomised clinical trial of an online training programme for carers of people with PCA, PPA and bvFTD. Alzheimer's & Dementia. 19 (S19). https://doi.org/10.1002/alz.075329
| Authors | Gonzalez, Aida, John, Amber, Brotherhood, Emilie V, Camic, Paul, McKee‐Jackson, Roberta, Melville, Mel, Sullivan, Mary Pat, Tudor‐Edwards, Rhiannon, Windle, Gill, Crutch, Sebastian J, Hoare, Zoe, Stott, Joshua and Impact, Rare Dementia Support |
|---|---|
| Abstract | Background Method Intervention: The experimental group was given access to an eight-week online program consisting of 6 digital manuals addressing practical strategies to better support people living with PCA, PPA or bvFTD (depending on diagnosis of the care recipient). The control group was directed to RDS’s existing website (TAU). Outcome measures: Feasibility of recruitment, measurement tools (clinical outcomes, see Table 1) and acceptability. Measures were collected at baseline, immediate post intervention (8 weeks post-randomisation) and 3 months post-randomisation. Randomization: Allocation ratio was 2:1 (intervention: control) stratified by diagnosis carried out by a central computer system. Participants were unblinded to intervention. All measures were self-reported online by the participants. Result Numbers analysed: 30 participants for intention to treat analysis (3 dropped out). Outcomes: Feasibility of recruitment (see Figure 1 Flowchart) is 40% (31 people consented/78 approached). Retention rate is 87%. The proportion of eligible participants who agree to participate is 97% (30/31).Assessment of feasibility of measurement tools (proposed clinical outcomes) shows 96% response rates at 8 weeks (29/30) and 90% (27/30) at 3 months. Acceptability: 100% of participants agreed to be randomised. Intervention coherence: 28% (6/21) participants interacted with facilitator during the intervention. Follow-up qualitative interviews were conducted to gain a better understanding of how to improve intervention coherence. Conclusion |
| Keywords | Psychiatry and Mental health; Cellular and Molecular Neuroscience; Geriatrics and Gerontology; Neurology (clinical); Developmental Neuroscience; Health Policy; Epidemiology |
| Year | 2023 |
| Journal | Alzheimer's & Dementia |
| Journal citation | 19 (S19) |
| Publisher | Wiley |
| ISSN | 1552-5260 |
| 1552-5279 | |
| Digital Object Identifier (DOI) | https://doi.org/10.1002/alz.075329 |
| Official URL | https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.075329 |
| Publication dates | |
| Online | 25 Dec 2023 |
| Publication process dates | |
| Deposited | 18 Jan 2024 |
| Output status | Published |
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