Skip to main content
OpenTrials
Completed

NCT Number: NCT05525377

Better Living With Non-memory-led Dementia

This is a feasibility study on the effects of an online-based training and education programme for carers of people with posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural-variant frontotemporal dementia (bvFTD).

Completed

Looking for future studies?

Notify Me

Key information

Conditions

Primary Progressive Aphasia Alzheimer Disease Aphasia Aphasia, Primary Progressive Brain Diseases Central Nervous System Diseases Communication Disorders Dementia Frontotemporal Dementia Frontotemporal Lobar Degeneration Language Disorders Mental Disorders Metabolic Diseases Nervous System Diseases Neurobehavioral Manifestations Neurocognitive Disorders Neurodegenerative Diseases Neurologic Manifestations Nutritional and Metabolic Diseases Pathological Conditions, Signs and Symptoms Proteostasis Deficiencies Signs and Symptoms Speech Disorders TDP-43 Proteinopathies Tauopathies

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

University College London

London, WC1N 3BG, United Kingdom

About this study

The purpose of this study is:

To evaluate the feasibility of an online training course for carers of people with PCA, PPA, and bvFTD. Feasibility measures will focus on the recruitment process and measurement tools.

To determine the acceptability of an online training course for carers of people with PCA, PPA and bvFTD.

The study will involve 6 online modules over the course of 7 weeks. All sessions will take place over the internet, using an online platform. A research team member (facilitator) will be available to assist participants over the course completion.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • . Adults (18+) who self-identify as an unpaid carer (partners, children, friends, etc.) of someone with PPA, PCA or bvFTD who is not living in a full-time care facility.
  • . The care recipient has to have a confirmed diagnosis of dementia (through self-report of the carer, to reflect the 'real world' application of the intervention).

Exclusion criteria

  • . Those unable to comprehend written English
  • . Those with no access to the internet

Treatment and study plan

Better living with non-memory led dementia course

Behavioral

Caregivers online training and educational phenotype-specific programme on how to support people with non-memory-led dementia.

Primary outcomes

  1. Study feasibility

    Time frame: Since June 2022 to January 2023 (8 months)

    Feasibility of recruitment process and measurement tools (e.g., number of people agreeing to be sent information about the study, time taken to fill in questionnaires).

  2. Acceptability

    Time frame: Since June 2022 to January 2023 (8 months)

    Prospective and retrospective acceptability (e.g., reasons for not taking part, task completion rate after every module)

Secondary outcomes

  1. WHO 5 Wellbeing Index

    Time frame: Change from baseline to 8 weeks and 3 months

    Short self-reported measure of current mental wellbeing (ranging from 0 (minimun) to 25 (maximun) scores). 0 representing the worst imaginable well-being and 100 representing the best imaginable well-being.

  2. Generalized Anxiety Disorder scale (GAD-7)

    Time frame: Change from baseline to 8 weeks and 3 months

    Generalized Anxiety Disorder scale (ranging from 0 (minimun) to 21 (maximun) scores). Higher scores indicates higher anxiety.

  3. Patient Health Questionnaire (PHQ-9)

    Time frame: Change from baseline to 8 weeks and 3 months

    Assesses depression severity (ranging from 0 (minimun) to 27 (maximun) scores. Higher scores indicate higher depression.

  4. De Jong Gierveld Loneliness Scale

    Time frame: Change from baseline to 8 weeks and 3 months

    Measure variations in total loneliness score ranging from 0 (minimun) to 11 (maximun) scores. 0 meaning not lonely and 100 very severe lonely score.

  5. Lubben Social Network Scale

    Time frame: Change from baseline to 8 weeks and 3 months

    Brief instrument designed to gauge social isolation in older adults by measuring perceived social support received by family and friends. Ranging from 0 (minimun) to 60 (maximun) scores. Higher scores represent higher social network.

  6. Pearling Mastery Scale

    Time frame: Change from baseline to 8 weeks and 3 months

    Measures the extent to which an individual regards their life chances as being under their personal control. Ranging from 7 (minimun) to 28 (maximun) scores. Higher scores indicate greater levels of mastery.

  7. Caregiver self-efficacy scale

    Time frame: Change from baseline to 8 weeks and 3 months

    Measures caregivers' beliefs about their ability to carry out behaviors such as obtaining respite, responding to disruptive patient behaviors, etc. Ranging from 0 (minimun) to 100 (maximun) scores. Higher scores reflect higher confidence.

  8. Dementia Management Strategies Scale

    Time frame: Change from baseline to 8 weeks and 3 months

    Instrument to appraise 3 care styles of caregivers: 1) Active management, 2) Criticism and 3) Encouragement. Ranging from 34 (minimun) to 170 (maximun). Higher scores mean a greater presence of behaviours associated to the the corresponding caregiver style.

  9. The quality of carer-partner relationship scale

    Time frame: Change from baseline to 8 weeks and 3 months

    Scale that measures closeness in a relationship. Ranging from 14 (minimun) to 70 (maximun). Higher scores reflect higher quality of carer-partner relationship.

  10. Questions about perceived burden and ethicality

    Time frame: At 8 weeks post-randomisation and 3 month follow up

    Tailored questions administered in a purposed-built interview. They

  11. Health economics questions

    Time frame: At 8 weeks post-randomisation and 3 month follow up

    Tailored questions administered in a purposed-built interview.

Sponsors and collaborators

Lead sponsor

University College, London

Other

Registry information

Official study title

Better Living With Non-memory-led Dementia: Feasibility Study on the Effects of a Blended Online Training Course for Carers of People With Atypical AD and FTD.

Important dates

Study start
2022
Primary completion
2023
Study completion
2023
First posted
Sep 1, 2022
Registry last updated
Apr 27, 2023

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Related clinical trials

Published trials that share one or more normalized conditions with this study.