Background
-
likely available number of eligible patients, caregivers or other appropriate participants and the willingness of participants to be recruited and of social care staff to identify and recruit participants
-
perceptions of participants as to what constitutes problematic wandering behaviour/getting lost, the perceived utility of GPS location and which types of people might benefit most from the intervention
-
rates of retention, compliance, and completion of study questionnaires
-
availability, usefulness and limitations of routinely acquired health service and social care data to assess outcomes
-
standard deviation of outcome measures to inform estimates of sample size for a future trial
-
time needed to collect and analyse data.
Methods
Ethical issues
Participants
Caregivers and people with dementia
Inclusion and exclusion criteria
Professional stakeholders
GPS location systems
Duration of observation
Frequency of follow-up
Testing the acceptability of baseline and outcome measures
Baseline measures
Outcome measures at end of study
Resource use and quality of life measures for use in economic evaluation
Time spent searching
Method of assessing baseline and outcome measures
Study power and statistical analyses
Qualitative evaluation
Results
Recruitment and retention of people with dementia and their caregivers
Recruitment into the qualitative evaluation
ID | Time in study | Type of device | Had geofence | Area description | Furthest distance from home before alert | Reasons given for this configuration |
---|---|---|---|---|---|---|
Months | Yes/no | |||||
P01
| 6 | VEGA support by BIELD | y | To local shops | 500m | - Area usually walked in recently |
- No major roads | ||||||
- Big enough to choose different routes | ||||||
P02
| 7 | Buddi | no | As soon as she started walking down the road her husband would go after her | ||
P03
| 7 | Buddi | y | Did not know what had been set at baseline | ||
P04
| 5 | VEGA support by BIELD | y | Centre of Edinburgh and main shopping centres | 5 km | - Area usually walked in recently |
- Familiar area/comfort zone – known for many years | ||||||
P05
| na | |||||
P06
| 4 | VEGA support by BIELD | n | - Legitimate outings would set it off | ||
P07
| 4 | ROMAD from TUNSTALL support by GEONOVO | y | Along main roads to the neighbouring towns | 7km | - Area usually walks |
P08
| 4 | SKYGUARD x 2 | n | - Too restrictive | ||
P09
| 4 | BUDDI | n | - Legitimate outings would set it off | ||
P10
| 4 | VEGA support by BIELD | y | Edinburgh | 8km reduced to 5km | - Boundary wasn’t a key concern as he covers a wide area |
P11
| 3 | SKYGUARD | n | - Legitimate outings concern that may not be able to contact call centre to turn off boundary | ||
- Too restrictive | ||||||
P12
| 1 | VEGA support by BIELD | y | Originally limited to their road then extended to whole of Edinburgh | ? 8km | - Area usually walks in (to supermarket) |
- Familiar area – because likes to visit other parts of Edinburgh where grew up |
Person with dementia | Caregiver(s) | Research involvement | |||||
---|---|---|---|---|---|---|---|
IDa
| Age | Dementia diagnosis | Baseline MMSE | Baseline BARTHEL | Consent | Relationship to dementia sufferer | Time in study |
C01P01 | 70-74 | Vascular | 18 | 95 | Consented | Husband | 6 months |
C02P02 | 60-64 | Alzheimer’s | 15 | 70 | Consented | Husband | 7 months |
C03P03 | 70-74 | Alzheimer’s | 15 | 55 | Consented | Wife | 7 months |
C04P04 | 75-79 | Unknown | 21 | 65 | Consented | Daughter and her husband | 5 months |
C05 | Unknown | - | Wife | Baseline onlya
| |||
C06 | 55-59 | Vascular | - | 55 | - | Sister | 4 months |
C07P07 | 70-74 | Alzheimer’s | 18 | 85 | Proxy | Wife | 4 months |
C08P08 | 90-94 | Lewy Body | 26 | 100 | Consented | Son and his wife | 2 months |
C09P09 | 70-74 | Unknown | 14 | 80 | Proxy | 3 sons | 4 monthsc
|
C10P10 | 60-64 | Alzheimer’s | Declined | Declined | Consented | Partner | 4 months |
C11P11 | 75-79 | Vascular | 25 | 90 | Consented | Daughter | 3 monthsb
|
C12 | 80-84 | Alzheimer’s | - | - | - | Wife | 1 monthb
|
Recruitment of professionals to the focus group and interviews
Number | |
---|---|
Social service staff
| 5 |
Occupational therapists
| 4 |
Community Psychiatric Nurse
| 1 |
Call Centre Operators
| 2 |
Police Officers
| 3 |
Total
| 15 |
Results from the qualitative interviews
Perceived utility and acceptability of using GPS location technology
Feasibility of proposed outcome measures
Caregiver stress and quality of life measures (mCSI,HADS, ICECAP-O and CES)
mCSI baseline | mCSI follow up | |
---|---|---|
n = 10 | n = 5 | |
MEAN
| 15.8 | 16.2 |
SD
| 4.6 | 4.6 |
Anxiety baseline | Anxiety follow up | Depression baseline | Depression follow up | |
---|---|---|---|---|
n = 10 | n = 5 | n = 10 | n = 5 | |
MEAN
| 12.2 | 13.4 | 8.9 | 10.6 |
SD
| 6.8 | 4.7 | 6.6 | 4.5 |
ICECAP-O | ICECAP-O | CES | CES | |
---|---|---|---|---|
Baseline | Follow up | Baseline | Follow up | |
N = 8 | N = 5 | N = 9 | N = 5 | |
Mean
| 0.62 | 0.58 | 0.61 | 0.58 |
SD
| 0.15 | 0.21 | 0.21 | 0.25 |
Time spent searching
Before GPS | With the GPS | |||
---|---|---|---|---|
ID | Typical time searching based on caregiver estimates from recall | Frequency searching | Typical time searching, based on caregiver estimates | Frequency of searching |
1
| 4 hrs | 1 event | 0 | 0 |
2
| 1 hour | 2 or 3 times a week | 10-30 mins | 2 a month |
3
| 2 hrs 30 | 1 event | 0 | 0 |
4
| 6 hours | 1-2 times a week | 30 - 45 mins | 1 or 2 a week |
5
| - | - | ||
6
| 3 hours + | Walking at night | 1 hour | 1 a month |
Unclear how often | ||||
7
| 20 mins | 1 or 2 occasions/month searching plus walks taking longer | 10-20 mins | 2 a month |
8
| No searching but had been brought home a few times by others and described getting lost herself | 1 or 2 | No searching- used to monitor | |
9
| No missing/searching but was found at 4am around the back of the bus station | 1 event | 0 | 0 |
10
| 19 hours | Occasional 1 major missing event | 45 minutes | At follow up, 2 or 3 times a day |
11
| 20 minutes – and P has described being lost | Occasional | 0 | 0 |
12
| 6hrs 30 | 2 main events | 0 | 0 |
MEAN
| 4 hrs 44 (2 hrs 56 excl. 19 hr) | 40 mins |
Month | Nov-11 | Dec-11 | Jan-12 | Feb-12 | Mar-12 | Apr-12 | May-12 | Jun-12 | Jul-12 | Total |
---|---|---|---|---|---|---|---|---|---|---|
No. times out of geofence | ||||||||||
P1
| 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 |
0
|
P4
| 0 | 1 | 1 | 6 | 2 | 1 | 3 | 3 | 1 |
18
|
P10
| 3 | 1 | 2 | 1 | 9 | 48 |
64
|
Time to admission to long-term care and hospital
Resource use and quality of life measures for use in economic evaluation
Comparison of carer recall of resource use with patients’ records
Unit cost £ | Telephone questionnaire (N = 6) | Patient records (N = 9) | |||
---|---|---|---|---|---|
Unit cost | Quantity | Cost (£) | Quantity | Cost (£) | |
AE | 130 | 0.5 | 65.0 | 0.3 | 43.3 |
OPD | 67 | 3.3 | 223.3 | 2.0 | 134.0 |
Inpatient days | 384 | 17.2 | 6592.0 | 15.8 | 6058.7 |
Day case | 498 | 0.2 | 83.0 | 0.2 | 110.7 |
GP surgery | 36 | 3.0 | 108.0 | 1.3 | 48.0 |
GP Home visit | 120 | 0.0 | 0.0 | 0.3 | 40.0 |
GP telephone | 22 | 2.2 | 47.7 | 1.7 | 36.7 |
PN surgery | 12 | 2.2 | 26.0 | 1.6 | 18.7 |
PN telephone | 4 | 1.3 | 5.3 | 0.0 | 0.0 |
DN visit | 27 | 0.8 | 22.5 | 0.7 | 18.0 |
DN telephone | 7 | 0.2 | 1.2 | 0.0 | 0.0 |
Out of hours | 0 | 0 | 0 | 0 | |
Total
| 7174.0 | 6508.0 |