Effective home support dementia care
| ISRCTN | ISRCTN12591717 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN12591717 |
| Secondary identifying numbers | 31288 |
- Submission date
- 25/07/2016
- Registration date
- 29/07/2016
- Last edited
- 30/08/2023
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Mental and Behavioural Disorders
Plain English Summary
Background and study aims
Dementia is a common condition in the aging population. People with dementia have difficulties with mental processes such as memory, language, reasoning and identifying people and objects, which become progressively worst over time. People are now living longer, meaning that dementia represents a significant public health and care challenge. About 60% of people with dementia live in their own homes but finding the best ways of helping them to live well at home and supporting their carers is a challenge. Although more innovative home support services, from the NHS, social care and voluntary organisations exist in some areas, they are often underdeveloped. The study will be for those in early stage dementia, receiving care through memory clinics. The aim of this study is to evaluate the effectiveness of memory aids (a tool used to trigger memory), delivered by Dementia Support Practitioners (DSPs).
Who can participate?
Adults aged 50 years and over with early stage dementia who are under the care of a participating memory clinic or equivalent.
What does the study involve?
Practices are randomly allocated to one of two groups. Those in the first group receive specialist advice, information and memory aids from DSPs, as well as usual care from the memory clinic or equivalent that they attend. The memory aids pack includes a calendar or clock, whiteboard with electric time, and ‘post-it’ note dispenser. Those in the second group receive usual care from memory clinics with a general guide to dementia for patients and carers. Participants and their carers are visited at the start of the study and then three and 12 months later to be interviewed about their opinions, quality of life and use of services in order to establish the effectiveness of the DSP program.
What are the possible benefits and risks of participating?
Participants may or may not benefit from participating in the treatment from the DSP. If participants are not chosen to take part in the treatment, there may be no direct benefits from taking part in the study. However, the information participants provide will help to strengthen the evidence for developing more appropriate support at home for those in early stage dementia. There are no notable risks involved with participating in this study.
Where is the study run from?
Nine Memory clinics or Older Adult Services in England (UK)
When is the study starting and how long is it expected to run for?
July 2015 to September 2018
Who is funding the study?
National Institute for Health Research (UK)
Who is the main contact?
Dr Paul Clarkson
paul.clarkson@manchester.ac.uk
Contact information
Scientific
2nd Floor, Crawford House
University of Manchester
Manchester
M13 9PL
United Kingdom
 ORCID ID |
0000-0002-0778-312X |
|---|---|
| Phone | +44 161 275 5674 |
| paul.clarkson@manchester.ac.uk |
Study information
| Study design | Randomised; Interventional; Design type: Treatment, Process of Care, Device, Rehabilitation |
|---|---|
| Primary study design | Interventional |
| Secondary study design | Randomised controlled trial |
| Study setting(s) | Hospital |
| Study type | Treatment |
| Participant information sheet | Not available in web format, please use the contact details below to request a patient information sheet |
| Scientific title | Effective home support in dementia care: Project 2.1 dementia early stage cognitive aids new trial |
| Study acronym | DESCANT |
| Study hypothesis | The aim of this study is to evaluate whether memory aids, delivered by Dementia Support Practitioners (DSPs), are effective and cost-effective. |
| Ethics approval(s) | North West - Haydock Research Ethics Committee, 20/06/2016, ref: 16/NW/0389 |
| Condition | Dementia |
| Intervention | Randomisation will take place after baseline interviews with consented participants but before data entry in MACRO4, the data entry database used in the study. On receiving completed screening forms and baseline interview schedules, the Trial Manager will complete a randomisation request form and email this to the Trials Unit (Swansea Trials Unit - STU). The participant will then be randomised by the Assistant Trial Manager at STU who will email the Trial Manager with a PDF with details of the allocation. Participants will be allocated on a 1:1 basis into Intervention: Dementia Support Practitioner – DSP or Comparator: Treatment As Usual – TAU without DSP. Comparator: Participants will receive a general guide to dementia for patients and carers as well as treatment as usual (TAU) in the form of support from their carers with or without help from memory clinic staff, post-diagnostic counselling and advice, and specialist follow-up. Intervention: Dementia Support Practitioners (DSPs) will augment TAU with specialist advice, information and memory aids. They will dispense appropriate aids; and provide training in using these aids and general advice about improving memory. Their standard pack of memory aids will include: calendar or clock, whiteboard with electric time, and ‘post-it’ note dispenser, with a budget of £150 per participant. Support and follow-up will seek to ensure correct use of the aids. DSPs will work alongside any existing support and offer the memory aids in addition. The total duration of treatment will be 4 weeks. For participants in both groups, follow up will be at 3 and 12 months after baseline (referral from memory clinic). |
| Intervention type | Other |
| Primary outcome measure | Activities of Daily Living (ADLs) are measured using the Bristol Activities of Daily Living Scale (BADLS) at baseline, 3, and 12 months. |
| Secondary outcome measures | 1. Cognitive function measured using the Standardised Mini-Mental State Examination (S-MMSE) at baseline, 3, and 12 months 2. Quality of life measured using DEMQOL and DEMQOL-PROXY (carer rated) at baseline, 3, and 12 months 3. Health status measured using the EQ-5D-5L at baseline, 3, and 12 months 4. Service receipt measured using the Client Service Receipt Inventory and the Resource Utilisation in Dementia (RUD) at baseline, 3, and 12 months 5. Minor psychiatric morbidity in carers measured using the General Health Questionnaire (GHQ-12) at baseline, 3, and 12 months 6. Carer coping measured using the Short Sense of Competence Questionnaire (SSCQ) at baseline, 3, and 12 months 7. Carer rating of patients’ performance of activities measured using the Revised Interview for Deterioration in Daily living activities in Dementia (R-IDDD) at baseline, 3, and 12 months 8. Patient quality of life measured using the ICECAP-O and CASP-19 at baseline, 3, and 12 months |
| Overall study start date | 01/07/2015 |
| Overall study end date | 31/12/2019 |
Eligibility
| Participant type(s) | Patient |
|---|---|
| Age group | Adult |
| Sex | Both |
| Target number of participants | Planned Sample Size: 360; UK Sample Size: 360 |
| Total final enrolment | 468 |
| Participant inclusion criteria | Participants with dementia: 1. Aged 50 years or older 2. Under care of one of the trial memory clinics or equivalent 3. Within one year of their first attendance at that clinic 4. Dementia is of mild to moderate severity 5. Physically able to engage with the intervention, usually as judged by researcher 6. Clinically able to engage with the intervention, usually as judged by responsible clinician 7. Living in their own home, or sharing a home with relative (i.e. not in residential or nursing home at baseline) Carers: The primary person who feels responsible for, and supports, the person with dementia. They may be any age and may live with the person with dementia or independently. |
| Participant exclusion criteria | Participants with dementia: 1. Individuals who are under 50 years of age 2. Advanced dementia, e.g. in late stages 3. Resident outside local authority boundary served by the service 4. Those currently undergoing emergency treatment or care |
| Recruitment start date | 12/09/2016 |
| Recruitment end date | 15/04/2019 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centres
Owens Farm Drive
Offerton
SK2 5EQ
United Kingdom
Tameside Hospital
Fountain Street
Ashton under Lyne
OL6 9RW
United Kingdom
Royal Oldham Hospital
Westhulme Avenue
Oldham
OL1 2PN
United Kingdom
Birch Hill Hospital
Union Road
Rochdale
OL12 9QB
United Kingdom
Bury
BL9 0JT
United Kingdom
Pettits Lane
Romford
RM1 4HP
United Kingdom
Morland Road
Dagenham
RM10 9HU
United Kingdom
Leytonstone
London
E11 4HU
United Kingdom
Goodmayes Hospital
Barley Lane
Goodmayes
IG3 8XJ
United Kingdom
Sponsor information
Hospital/treatment centre
Faculty of Medical & Human Sciences
Room 3.53 Simon Building
Brunswick Street
Manchester
M13 9PL
England
United Kingdom
| Phone | +44 161 275 5436 |
|---|---|
| lynne.macrae@manchester.ac.uk | |
"ROR" |
https://ror.org/027m9bs27 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 31/03/2020 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | The findings of this trial will inform the case for structured support to patients diagnosed with early-stage dementia and their carers. It is therefore planned to present findings to professionals who care for dementia; and to submit them for publication in high-impact medical journals and specialist mental health journals. If the trial is successful, the study team intends to develop a toolkit to inform commissioners, managers and practitioners in late 2018. |
| IPD sharing plan | The datasets generated during and/or analysed during the current study are not expected to be made available |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Protocol article | protocol | 10/10/2018 | 10/12/2020 | Yes | No |
| Results article | results | 19/10/2021 | 22/10/2021 | Yes | No |
| HRA research summary | 28/06/2023 | No | No | ||
| Results article | 30/06/2021 | 30/08/2023 | Yes | No |
Editorial Notes
30/08/2023: Publication reference added.
22/10/2021: Publication reference added.
10/12/2020: Publication reference added.
08/05/2019: The total final enrolment was added.
04/04/2019: The recruitment end date was changed from 31/03/2019 to 15/04/2019.
02/04/2019: The condition has been changed from "Specialty: Dementias and neurodegeneration, Primary sub-specialty: Dementia; UKCRC code/ Disease: Neurological/ Other degenerative diseases of the nervous system" to "Dementia" following a request from the NIHR.
06/12/2018: The following changes have been made:
1. The recruitment end date has been updated from 30/11/2018 to 31/03/2019.
2. The overall trial end date has been updated from 30/06/2019 to 31/12/2019.
3. The intention to publish has been updated from 31/12/2019 to 31/03/2020.
13/07/2018: The following changes have been made to the trial record:
1. The trial end date has been changed from 01/09/2018 to 30/06/2019
2. The recruitment end date has been changed from 30/06/2018 to 30/11/2018.
3. The intention to publish date has been changed from 31/12/2018 to 31/12/2019
