Perth and Kinross POA Occupational Therapy – Driving and Dementia.
Research type
Research Study
Full title
Retrospective review of current practice in Perth and Kinross to inform clear guidelines around referral to occupational therapy for specialist assessment for people with dementia or mild cognitive impairment who are still driving.
IRAS ID
271319
Contact name
Hazel R. Douglas
Contact email
Sponsor organisation
Tayside Health Board
Duration of Study in the UK
1 years, 11 months, 29 days
Research summary
Research Summary:
Receiving a diagnosis of dementia will inevitably lead to a decision to stop driving at some point as the disease progresses. The ongoing dilemma is how to make the best decision for the person and public – at the right time.In Perth and Kinross, specialist assessment of the cognitive skills for safe driving is completed by the occupational therapist, and the result is then used to provide an evidence base to inform the decision making process – can the person continue to drive / should the person be referred for an on-road test, or is it time to hang up the keys?
Historically the decision was a subjective one made by a doctor, and people with dementia often had to stop driving too soon, or conversely were driving far beyond that which was safe.
As referral rates to occupational therapy have increased, so too has the number of inappropriate referrals. It became very clear that we needed to produce an evidence based referral guideline, however in order to provide the evidence – we needed to complete our own research.
The purpose of this research is to inform such a referral guideline, and ensure the rights of the person with dementia are protected.
This will be a retrospective study using data generated as part of normal clinical practice and there will be no impact or change to clinical practice using this method.
We will complete retrospective data collection and analysis, seeking any correlation between the specialist cognitive driving assessment tool used and the generalist cognitive screen which is used at memory clinic. We will explore any defined area of generalist screen score which clearly merits assessment of driving skill.
We will also seek specific information and trends regarding the use of the specialist cognitive driving assessment with the dementia population.
Lay Summary of Results:
Retrospective review of current practice in Perth and Kinross to inform clear guidelines around referral to occupational therapy for specialist assessment for people with dementia or Mild Cognitive Impairment who are still driving.
Sponsor reference number 3-038-19
REC reference: 19/NW/0755
IRAS project ID: 271319
Research Registry: 5306Introduction
Dementia is the name for a group of symptoms that affect a person’s memory, thinking, cognition, language, behaviour and social abilities. There are many different types of dementia. Dementia is normally progressive (gets worse over time). A person with some mild symptoms such as memory loss or minor changes to cognition (the way they think and respond to circumstances through language or actions) may be diagnosed with Mild Cognitive Impairment. Some people with Mild Cognitive Impairment will later go on to develop dementia.
One of the concerns that people have when they are diagnosed with dementia is their safety to drive a vehicle. A person with early stage dementia or Mild Cognitive Impairment may be able to continue to drive initially, but there will inevitably come a time when the driver will need to stop as the disease progresses. This is a very difficult decision for people, and they often face a dilemma when deciding the right time to stop driving.Occupational therapists can help people to make the best decision for them, at the right time. Occupational therapists understand that the decision to stop driving can have a big impact on the person’s quality of life and independence. It can also negatively impact a person’s self-confidence and identity, especially if they have been driving for many years.
An occupational therapist will complete specific cognitive driving assessments with the person and will make one of the following recommendations:
• The person can continue to drive and will have a review after 12 months
• The person should attend an on-road driving test to confirm their suitability for driving.
• The person should no longer drive.It is important that people are referred for occupational therapy assessment at an appropriate time. Many people are referred unnecessarily, either when the person is in the early stages of dementia and are still very able drivers, or when the person’s dementia is so far advanced that they are clearly unsafe to be driving. Even if this appears obvious to the person making the referral, they may still be reluctant to make a final decision for the person without occupational therapy assessment.
Putting people through unnecessary assessments at the wrong time can be very distressing for them. It also places a lot of demand on the occupational therapy service. There is also a risk that a miss-timed or inappropriate assessment could break down the relationship between the person and their therapist, or even between the person and their family if the outcome is difficult.
We conducted a research study to help ensure that people with dementia are referred to occupational therapy at the right time and receive the right level of assessment. The study was carried out by occupational therapy staff working in Perth and Kinross to develop clear guidelines around referral to occupational therapy for specialist assessment for people with dementia or Mild Cognitive Impairment who are still driving.
Study Background
When people with dementia are referred to the occupational therapy service in Perth and Kinross for driving assessment, a general cognitive assessment will have been completed in most situations prior to referral. If this is not the case, the occupational therapist will complete this general assessment before completing a specialist cognitive driving assessment if necessary.
The general cognitive assessment screening tool is called the Addenbrookes Cognitive Exam III. It helps to indicate changes in all aspects of the person’s cognition (the way they think, and respond to any situation or circumstance through their language or actions). The person is given a score, which indicates if further scans or investigations are required as well as giving an indication of the level of any impairment. A higher score on the Addenbrookes Cognitive Exam III means the person has fewer problems with cognition.
The specialist cognitive driving assessment is called the Rookwood Driving Battery. This assessment is not specific to dementia and can be used with any person who has cognitive changes due to illness or trauma at any age. A lower score on the Rookwood Driving Battery indicates a better performance.
We wanted to find out if the score a person achieved on the Addenbrookes Cognitive Exam III could predict how they would perform on the Rookwood Driving Battery. We wanted to identify if there was a cut-off score on the Addenbrookes Cognitive Exam III below or above which there would be no valid reason for us to carry out the Rookwood Driving Battery. Having answers to these questions would help us to make sure that people were not put through additional assessments unnecessarily.
Previous research studies that have used the Rookwood Driving Battery have not typically included many people with dementia. The studies that have included a small number of people with dementia have said that the upper cut-off score for a pass (less than or equal to 10) might be unreliable for decision making with people who have a dementia. These studies suggest that the lower cut-off score (less than or equal to 6) is more reliable for people with dementia.
Our research is an opportunity to focus specifically on the use of the Rookwood Driving Battery with people with dementia. We wanted to see if it was possible to compare participants’ Rookwood scores with their on-road test. We also wanted to collect data about people’s demographic information and dementia type to see if this had any impact on driving outcomes. This would help us understand if there are any links between specific types of dementia, age or gender and a person’s performance on either the Addenbrookes Cognitive Exam III or the Rookwood Driving Battery.
Study Design
We completed a retrospective review of patient notes between January 2020 and April 2021.
This meant that we were looking back at information that is routinely recorded in people’s notes, rather than having direct contact with them. The study was reviewed and approved by the North West Greater Manchester Research Ethics Committee.The data were collected by an occupational therapist and reviewed by a research assistant who quality checked the data for accuracy. The specific data we collected from the patient notes were:
• Gender
• Age
• Diagnosis
• Addenbrookes Cognitive Exam III score
• Rookwood Driving Battery score
• Fitness to drive decision
• On-road test result (where applicable)
(The time frame between completing the Addenbrookes Cognitive Exam III and the Rookwood Driving Battery was within 6 months for the data to be included in the study).The results were analysed between May 2021 and December 2021 and have been checked by a statistician. Statistical analysis software package R (version 4.0.5) was used to analyse the results.
The chief investigator would like to thank everyone involved. Our study received grant funding of £5000 from the Constance Owen’s Trust in the form of the Royal College of Occupational Therapists Early Researcher Award for 2020. These monies enabled us to employ a part-time research assistant for 12 months as part of the data collection phase of the study.
Summary of Study Results
Demographics
The study sample group size was 98 participants with an age range between 63 and 94 years.
61 participants identified as male with 37 participants identifying as female.Within the sample group 33.67% had Alzheimer’s disease, 28.57% had Vascular Dementia, 20.40% had Mild Cognitive Impairment (MCI), 16.32% had Mixed Dementia and 1.02% had ‘other’ non-specified type of dementia.
There were no participants with either Frontotemporal Dementia or Dementia with Lewy Bodies included in the data. This may have been due to other factors within the presentation of these dementias impacting driving at an earlier stage
The table below breaks down the sample group by dementia type and highlights data for each.
(ACE III = Addenbrookes Cognitive Exam III, and RDB = Rookwood Driving Battery).Alzheimer’s Vascular Mixed MCI Other
Total 33 28 16 20 1
Age-range 64-89 63-94 67-88 72-88 88
ACE III score range 36 -82 54-83 34-82 42-94 72
RDB score range 2-22 3-17 3-19 0-17 14
Sat on-road test 8 4 1 1 -
Pass on-road 2 0 1 1 -
Fail on-road 6 4 0 0 -Can the Addenbrookes Cognitive Exam III predict the person’s performance on the Rookwood Driving Battery?
The results show that there is a relationship between the two assessments: as the Addenbrookes Cognitive Exam III score drops, the Rookwood Driving Battery score increases. This was the expected outcome.
No participant passed the Rookwood Driving Battery with an Addenbrookes Cognitive Exam III score of less than 65.
We were unable to identify an upper Addenbrookes Cognitive Exam III score above which the participants consistently passed the Rookwood Driving Battery. This is because there were 2 participants who scored highly on both the Addenbrookes Cognitive exam III and the Rookwood Driving Battery which was unexpected. This may be due to the participants’ academic ability which is known to impact the Addenbrookes Cognitive Exam III score. Studies have shown that there is no impact of intelligence on the Rookwood Driving Battery. Therefore, this unusual result may indicate that the Rookwood Driving Battery subtests are a more sensitive and accurate indication of a person’s cognitive level. This gives us clear evidence to build a referral guideline to help ensure that people will be referred for specialist assessment at the right time.
Does Diagnosis impact performance?
There was no significant impact of type of dementia on the Rookwood Driving Battery performance; however, people with Mild Cognitive Impairment scored significantly better on the Addenbrookes Cognitive Exam III than participants with an actual dementia diagnosis. There was no significant impact of gender or age on performance in this study.Decision following assessment
After completing the Rookwood Driving Battery – participants were involved in a decision to:
1. Carry on driving
2. Attend a 12 month review
3. Be referred for an on-road test
4. Stop drivingNine participants were able to continue driving, 8 participants were asked to complete a repeat assessment in 12 months, 35 participants were referred for the on-road test and 46 participants were asked to stop driving.
How did the on-road data relate to the Rookwood Driving Battery Score?
Of the 35 participants referred for the on-road test, data were only available for 14 participants during the data collection phase.Possible reasons for this difference in number:
1. The person died before sitting the on-road test
2. The person’s dementia got worse whilst awaiting the on-road test (3-5 months wait)
3. The person missed their appointment for on-road test
4. The person changed their mind during the wait for the on-road test
5. The impact of COVID-19 prevented the person from taking the on-road test
On-road Data
The table below shows how many people passed or failed their on-road driving test, broken down by sex, age, type of dementia and their scores on the Addenbrookes Cognitive Exam III (ACE III) and Rookwood Driving Battery (RDB) assessments.Total M F Age range Alz VD MIX MCI OTH ACE III range RDB range
Pass 4 4 - 64-85 2 - 1 1 - 74-83 5-7
Fail 10 7 3 72-88 6 4 - - - 54-78 6-12
Totals 14 11 3 - 8 4 1 1 - - -Three of the participants identified as female and 11 identified as male, with an age range of 64 to 88 years. None of the female participants passed the on-road test. Eight participants had Alzheimer’s disease, 4 had Vascular Dementia, 1 participant had Mixed dementia and 1 participant had Mild Cognitive Impairment.
Four participants passed the on-road test. Their scores on the Addenbrookes Cognitive Exam III ranged between 74 and 83, and their scores on the Rookwood Driving Battery ranged between 5 and 7. Ten participants failed the on-road test. Their scores on the Addenbrookes Cognitive Exam III score ranged between 54 and 78, and their scores on the Rookwood Driving Battery ranged between 6 and 12.
Although the sample group size for the on-road test data was small, there is a definite indication that the participants who scored higher than a 6 on the Rookwood Driving Battery failed their on-road tests. The majority of fails on-road were above this score. No-one who scored greater than 7 on the Rookwood Driving Battery passed the on-road test.
One person who scored 5 on the Rookwood Driving Battery passed their on-road test. Two participants with a score of 6 on the Rookwood Driving Battery passed the on-road test, whilst one failed.So what does it mean?
The results have shown a clear relationship between how a person’s score on the Addenbrookes Cognitive Exam III may predict their performance on the Rookwood Driving Battery. There is a negative correlation which means that as the Addenbrookes Cognitive Exam III score decreases, the person’s score on the Rookwood Driving Battery will increase.
For people scoring more than 65 on the Addenbrookes Cognitive Exam III, the Rookwood Driving Battery is very useful in assisting to make an evidenced based driving decision with the person. There was no data confirming a safe upper cut-off score on the Addenbrookes Cognitive Exam III above which there was no need or value in completing the Rookwood Driving Battery. There were 2 participants whose scoring was unusual and unexpected – scoring highly on both the Addenbrookes Cognitive Exam III and also on the Rookwood Driving Battery.
The research has shown that participants scoring below 65 on the Addenbrookes Cognitive Exam III have very little likelihood of achieving a score of less than 6 on the Rookwood Driving Battery which is classed as a pass at the lower cut-off point.
The data also appears to confirm that a score of 6 on the Rookwood Driving Battery is a more reliable cut-off for people with dementia. Only one participant who sat the on-road test with a score greater that 6 (7) on the Rookwood Driving Battery passed the on-road test. There is therefore a need to consider current referral practices for the on-road test when the Rookwood Driving Battery score is closer to a 5 or 6. These results are useful in enabling occupational therapy referrals to be made based on an Addenbrookes Cognitive Exam III score as well as other factors with each person. In turn, the Rookwood Driving Battery will be used when it will be helpful and there will be less risk of unnecessary assessment. Referrers will be more confident about when to refer.
After assessment using the Rookwood Driving Battery, occupational therapists will be able to guide decision making with confidence based on the person’s score, however it must be remembered that a rights based approach will facilitate the person to sit an on-road test even if it is likely that they will fail and it is their clear wish to be given the chance. Often the on-road test itself is the most meaningful part of the assessment process for the person.
Further research
It would be interesting to complete further research with a larger sample for the on-road data with the Rookwood Driving Battery score as further evidence specific to dementia. However, there is clear confirmation in the small sample group which backs up previous research indicating that the cut-off score on the Rookwood Driving Battery of 6 is a more reliable pass/fail score for people with dementia.Next steps
We plan to publish the study in a peer reviewed academic journal and via scientific conferences.We also plan to create clear local referral guidelines for our referrers within Perth and Kinross which will give a clear evidence based point for referral using the Rookwood Driving Battery and reduce unnecessary harm through unrequired assessment.
We hope that the evidence generated by the study will have a positive impact on clinical practice throughout the UK and beyond for services who choose to assess using the Rookwood Driving Battery, and that this will result in an equitable and rights based practice for all drivers with dementia.
Hazel Douglas OT
Chief InvestigatorREC name
North West - Greater Manchester West Research Ethics Committee
REC reference
19/NW/0755
Date of REC Opinion
2 Dec 2019
REC opinion
Favourable Opinion