GOLD Book Carer decision support for carers of people with dementia

Carer decision support: pilot evaluation of the GOLD Book decision aid for carers of people with dementia - a randomised controlled trial

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

ISRCTN

Registry ID

ISRCTN32163031

Enrollment

Registered

2011-08-10

Start date

2010-02-01

Completion date

Unknown

Last updated

2020-02-10

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Stress and decisional conflict in carers of people with dementia Mental and Behavioural Disorders Stress, not elsewhere classified

Interventions

The GOLD Book decision aid will be given to the intervention group, with control group receiving normal service support. Control group partiicpants will receive the GOLD Book decision aid after the 3

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1. Primary carers of people with dementia living in the community 2. Aged 18+. self-identified as primary carers for a person with dementia 3. Able to read and speak English 4. These carers will be informal in the sense that they will be family members or friends and will not be undertaking care in a paid capacity

Exclusion criteria

Exclusion criteria: 1. Children and/or young people (ie. <18 years) 2. People with an intellectual or mental impairment 3. Women who are pregnant 4. People highly dependent on medical care

Design outcomes

Primary

Measure	Time frame
The Modified Carergiver Strain Index (MCSI) is a 13 item measure used to measure carer stress. The outcomes of the intervention will be assessed by comparisons between control and intervention groups at baseline (Time 1) and three months post intervention (Time 3), with the intervention given one week after baseline data is collected. Surveys will be delivered through face to face and phone interview.	—

Measure

Time frame

The Modified Carergiver Strain Index (MCSI) is a 13 item measure used to measure carer stress. The outcomes of the intervention will be assessed by comparisons between control and intervention groups at baseline (Time 1) and three months post intervention (Time 3), with the intervention given one week after baseline data is collected. Surveys will be delivered through face to face and phone interview.

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Secondary

Measure	Time frame
1. Carer decisional state will be ascertained using the Decisional Conflict Scale (O'Connor 1993/2005), a 16 item survey that yields a 5 scale measure of decisional uncertainty, and the Control Preferences Scale (Degner et al. 1997), which measures treatment decision making using 5 response statements. 2. Knowledge of dementia using a researcher generated knowledge survey 3. The outcomes of the intervention will be assessed by comparisons between control and intervention groups at baseline (Time 1) and three months post intervention (Time 3), with the intervention given one week after baseline data is collected. Surveys will be delivered through face to face and phone interview.	—

Measure

Time frame

1. Carer decisional state will be ascertained using the Decisional Conflict Scale (O'Connor 1993/2005), a 16 item survey that yields a 5 scale measure of decisional uncertainty, and the Control Preferences Scale (Degner et al. 1997), which measures treatment decision making using 5 response statements. 2. Knowledge of dementia using a researcher generated knowledge survey 3. The outcomes of the intervention will be assessed by comparisons between control and intervention groups at baseline (Time 1) and three months post intervention (Time 3), with the intervention given one week after baseline data is collected. Surveys will be delivered through face to face and phone interview.

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Countries

Australia

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Mar 26, 2026