“Driving and Dementia” AHP Dementia Webinar

Thanks so much to all. Really valuable session.

Really great webinar everyone was super.

Every two months we work together as an allied health professionals community to develop, for you, a national AHP Dementia Webinar where we share the work and practice of allied health professionals in Scotland. Our vision for the webinars is “through working in partnership, we can all improve outcomes for people that really matter”.

Our AHP Dementia webinar in October 2023 with just over 200 people was called “Sharing the importance of driving from the perspectives of lived experience, clinical practice and research”. Our guest presenters were:  

Stuart Dougall – Scottish Dementia Working Group (SDWG)

Dr Tashfeen Chaudhry – Scottish Driving Assessment Service, SMART centre, Astley Ainslie Hospital, NHS Lothian

Hazel Douglas – Occupational Therapist Team, Lead Perth & Kinross, NHS Tayside

You can WATCH AGAIN, the webinar link is here

This webinar builds on and provides an update to the previous driving and dementia webinar held in October 2020 that you can also watch here

Your Q&A

During the webinar, participants asked lots of great questions and today we are posting the replies from our webinar host. Please leave any further comments on this blog post to continue the conversation with you at the end of this blog or email us at AHPDementia@alzscot.org

Question: I would like to know whether DriveAbility Scotland have any role to play in driving dementia assessments?

Answer: We are aware of DriveAbility Scotland but they are not affiliated with our service and we do not know anything about their standards or processes so cannot really comment. It is our understanding that they charge clients for assessments unless they have been referred directly by DVLA.

Question: Are there any plans for a change in who can refer a driver to SMART for the full medical driving assessment- given the recent change in the law allowing professionals such as occupational therapists to make fitness to drive decisions and report directly to the DVLA? Answer: We have no plans to change our referral pathways at this time. We still only accept referrals from doctors as there are occasions when we require further medical information before deciding whether we can proceed with assessment and that information is usually best provided by the referring doctor.

Question:, Stuart, what advice would you offer to other people who maybe recently diagnosed with dementia and are concerned about maybe needing to stop driving ?   Answer: Firstly, you have to notify DVLA and I would suggest that you inform your insurance company.   On your diagnosis you will have advised your suitability to continue to drive.  If the Doctor advises you can still drive, I would advise to do so as long as you feel safe to do so, although this will be re-assessed by DVLA and your Doctor on a yearly basis.

You might feel the need to make slight adjustments, like only driving on familiar roads, driving only short or shorter distances than you previously made, but keep going as long as you can as it greatly helps with your independence.

With regards to driving, plan well ahead and treat it no differently as before, don’t over think.

Take your family or friends advice if they think it is time for you to stop driving, then do it as they are the people who are with you most of the time, looking at the overall situation independently and are aware of your situational awareness and ability to react to different situations as they me arise.

Question: What support to you offer or signpost to people when you advise against driving?

Answer: We have a leaflet which gives information about transport alternatives in Scotland. The information is fairly generic as a lot of transport alternatives are provided by local councils and can differ between different parts of Scotland(eg Taxi Cards). We usually suggest the patients we see also contact their local council or check their council website to see what is specifically available to them.

Question: Do people travelling to Edinburgh need to meet their own travel costs?

Answer: As far as we are aware there is no formal process for reimbursement and NHS Lothian cannot provide this. Patients can apply to their own health board for reimbursement but this is not guaranteed and is a decision for each health board.

Question: How do you minimise the potential for subjectivity during the on-road test with different examiners?

Answer: We do as much as we can to minimise the potential for subjectivity. We have a robust and comprehensive training programme for new staff members. The on road assessments are scored on scoring sheets which are standardised and accepted by DVLA. The route that the on road assessment takes place on is also based on national UK standards and is also accepted by DVLA. This all makes sure that as much as possible we are all working to the same standard.

Question: Can I ask where families stand in advising relatives not to drive when the individual with dementia thinks they are still safe to drive but the family do not?

Answer: Families and caregivers have so much to offer within the topic of driving and dementia, however this does bring some significant challenges.

Begin the conversation as soon as possible.

Driving is now routinely discussed as part of the initial appointment for memory screening, this opens up a dialogue within a safe place and with staff there to support the conversation. As a result the family can go on to discuss it after the appointment with their loved one. We encourage families and drivers with dementia to monitor their driving over a period of time against a list of things to look out for, however above all we emphasise that we want to support the person to remain driving for as long as they are able to.

Use a caregiver questionnaire

Enabling the family to complete a written questionnaire about their loved one’s driving is extremely useful, enabling them time to write down any concerns they have, rather than have them speak about it in front of their loved one. It can enable more honesty without risk of causing upset or irritation for their loved one. Families generally wish to protect their relationship with the loved one and may choose not to discuss their concerns in front of them. The staff member can then follow it up via a phone call to the family at a suitable time.

Families who want to eliminate risk or who choose to minimise any risk.

Families react in many different ways. Sometimes well-meaning families wish to eliminate all risk for their loved one and keep them safe, so they may push for the person to be told to stop driving. Premature driving cessation is not good for promoting overall wellbeing and engagement in occupations for a driver and can have a huge impact on their sense of self-worth and personhood.

In these situations it is vital to encourage the family to use a risk enabling approach which may involve modifying driving habits, and results in a win-win situation for everyone.

A lovely example is of a gentleman in his 60s with young onset Alzheimer’s disease who was still working and needed to drive a van as part of his job. We worked with him on an annual basis to complete annual assessments and he was able to retain his licence for a further 3 years which meant that he was also able to remain in employment. His wife worked closely with us each year phoning the team when the DVLA letter arrived so we could book in his annual assessment in a timely way in relation to the DVLA timelines.

After assessment if the person is told not to drive.

This is undoubtedly one of the most difficult situations a family may have to face. If the person with dementia has been advised not to drive following assessment, and they continue to do so:

• If the person won’t give up the car or they need to see tangible evidence that they still have a car, then we have supported families to “loose the keys” or disconnect the battery – so the car is “broken” and waiting to be fixed – with some degree of success.
• For the person who continues to drive against medical advice, their insurance policy is no longer valid and they are breaking the law. In these situations we have no other choice but to inform the DVLA and the local police if required. Situations like this can be very difficult for everyone involved.

We invited you all at the end of the webinar to share something you will take away from today’s webinar and use in your practice, or life, going forward. Here is a selection of your replies. We wish you every success in following up your ideas and inspirations that you shared with us.

Driving and Dementia is an important conversation!

I will await the research paper, but it makes me feel a bit more confident in our clinical practice.

Stuart’s positivity and being comfortable talking about how he knows the day will come that he will no longer be safe to drive.

The amount of people that are assessed as still being able to drive. More hopeful than I had thought.

More detailed knowledge of what driving assessments consist of, often I’m asked about this so I can now give a bit of a better picture of what people can expect.

Practical considerations that require to be made in application of driving assessment in clinical practice.

Dementia is not the end of driving.

What happens at the driving assessment centre, that it is the only centre in Scotland and that occupational therapists could be helpful in carrying out pre-screening for driving assessment in the future?

Stuart’s words about not giving up, that dementia is only one aspect of him, and that just because you can’t peel as potato today doesn’t mean you won’t be able to do it tomorrow.

Where to direct someone who is having to face the possibility of not driving. I will remember the point we as a family decided my mum should no longer drive and whilst I have no doubts that was right, the impact on her independence was significant. Adopt Stuart’s philosophy and concentrate on what you can do.

I will definitely be looking out for Hazel’s paper and looking in to this further as it may impact the assessments carried out by our team.

It is beneficial to know what the process is for assessment of driving, and I have made notes of further research I will do into the subject.

Information I can share with a family member about driving with dementia.

COMING SOON: Wednesday 26^th June, 3.30pm-4.30pm where the topic will be Brain Health and the role of allied health professionals to support brain health everyday. Email us at AHPDementia@alzscot.org for more information or to let us know what content you would be interested to learn more about.

Stay connected.

We post daily hints at tips at @AHPDementia

We blog weekly www.alzscot.org/talking_dementia

We use #AHPConnectingPeople & #AHPScot

We support our AHP students to share their work at AHPDementia Instagram 

We share self-management resources at www.alzscot.org/ahpresources

We have an email for you to send questions  AHPDementia@alzscot.org

We developed an interactive website with 32 resources for you www.cpcs.online

A change in perspective

Reflection from occupational therapy students on placement with Alzheimer Scotland regarding young onset dementia

Samantha, Chloe & Stuart

Hello, my name is Chloe, and I am a 2^nd year Master of Occupational Therapy Student studying at Queen Margaret University. I am currently on my final practice placement in Alzheimer Scotland alongside another Occupational therapy student, Samantha. We have worked collaboratively over the last 10 weeks to create awareness for our profession. Our efforts have included creating and leading groups in the West Lothian Alzheimer Scotland Brain health and dementia resource centre, with a central focus on meaningful occupations. During this time, we have had the privilege to meet some incredible individuals living with a young onset dementia diagnosis, an experience that has reshaped our understanding of this disease. This blog aims to encapsulate our preconceptions of dementia and how these have transformed and allowed us to recognise the occupational consequences of young onset.

Initially, both Samantha and I had never heard of young onset dementia nor met someone with this diagnosis. After some research and chatting with the centre manager we gathered that young onset can be defined as anyone with a dementia diagnosis under the age of 65 and accounts for over 3% of all dementia diagnoses. This statistic surprised us, highlighting its prevalence and the lack of attention it receives. We reflected on how we had unknowingly fallen into the stigma associating dementia exclusively with older individuals.

Through attending various groups and speaking with insightful individuals within the Scottish Dementia working group we began to recognise the different occupational needs for those with a young onset diagnosis. One stand alone factor was the loss of a working role after a diagnosis of young onset dementia. Many individuals we spoke with shared feelings of frustration and sadness when reflecting on the moment they were medically advised to retire from their jobs due to their diagnosis.

From an occupational therapy standpoint, we recognize this as a loss of occupational identity – a deep-seated sense of self and aspirations shaped by one’s history of engagement in meaningful activities. A loss in occupational identity can have a rippling effect on habits and routine and can cause a person to disengage from other occupations.

Kenny, a member of the Scottish Dementia Working Group, emphasized the potential for continued employment with the right support, stating:

With the right support I have no doubt I could have continued

to do my job and could still be doing it today.”

This quote powerfully captures the challenges faced by individuals with young onset dementia in maintaining their occupational roles and identities. While many individuals with young onset dementia encounter such obstacles, we were inspired by the resilience and resourcefulness demonstrated by those we spoke with. Among them, two individuals, Kenny and Stuart (who is pictured above), found new purpose within the Scottish Dementia Working Group. Stuart has been involved in presenting his story in conferences across the world including the Alzheimer Europe Conference in Helsinki and has also been involved meeting with members of the Scottish government advocating for the rights of those with a dementia diagnosis. Others discovered fulfilment through volunteering or learning new skills, such as photography.

These stories illustrated to us the remarkable capacity for adaptation and growth these individuals have even in the face of significant challenges. They have reminded us of the importance of our role as occupational therapists in fostering environments to support individuals when they are experiencing challenges and help them to explore new avenues for meaningful engagement and participation in occupations. By embracing their strengths, these individuals have continued to lead a purposeful and fulfilling life despite their loss in meaning roles.

Our change in perspective regarding dementia as not just an older person’s disease has profoundly influenced our placement for the better. It has enabled us to acknowledge the stigma associated with dementia and has encouraged us to combat this. Recently, we had the opportunity to presented to first year occupational therapy university students on the topic of Brain Health. During our presentation, we shared insights about young onset dementia and recounted the stories of individuals we had met. The students were visibly surprised and moved by this information, realizing that dementia is not exclusively a consequence of aging. Our presentation carried a powerful underlying message:

Dementia can affect anyone, regardless of age, and it is essential as occupational therapist to recognise the different occupational challenges but also their potential for adaptation in those diagnosed with young onset.

If you would be interested in viewing our presentation slides please click here.

We hope this blog was informative and offered an insight into the professional development that we have undergone during our time at Alzheimer Scotland. We hope this blog will encourage others to recognise the occupational challenges experienced by young onset dementia and empower people to adapt using their unique strengths. Together we can tackle this stigma!

For more information regarding the work we have been completing on our placement please visit the @ahpdementia Instagram page.

Contributors:

This blog was written by Chloe O’Neill Costello and Samantha Henderson, final year Occupational Therapy students at Queen Margaret University. The content was inspired by many of the wonderful individuals that attend Alzheimer Scotland services. We would like to say a special thank you to Kenny Moffat – Member of the Scottish Dementia Working Group and Norman Williamson – Active Voice Development Officer for informing our blog and providing us with a quote.

References:

Health and Care Professions Council (HCPC) (2023) ‘Occupational Therapist: The standards of proficiency for occupational therapists’. Available at: https://www.hcpc-uk.org/standards/standards-of-proficiency/occupational-therapists/. (Accessed: 02 March 2024).

Royal College of Occupational Therapy (RCOT) (2021) ‘Professional Standards for occupational therapy practice, conduct and ethics’. Available at: https://www.rcot.co.uk/publications/professional-standards-occupational-therapy-practice-conduct-and-ethics. (Accessed: 19 March 2024).

SIGN 168 (2023) ‘Assessment, diagnosis, care and support for people with dementia and their carers.’ Available at: https://www.sign.ac.uk/media/2157/sign-168-dementia.pdf. (Accessed: 19 March 2024).

Taylor, R., Bowyer, P. and Fisher, G. (2023) Kielhofner’s Model of Human Occupation. Lippincott Williams & Wilkins. Available at: https://ot.lwwhealthlibrary.com/book.aspx?bookid=3270 (Accessed: 23 March 2024).

Lifestyle Matters

https://dementiatogether.online/home/lifestyle-matters

Connecting People, Connecting Support was designed to help you embed health promoting activities into your daily routine. Whether you are visiting this website because you have been told that you have mild-cognitive impairment, have been given a diagnosis of dementia, or want to keep well by taking steps to maintain good brain health, there is something here for everyone.  

Connecting People Connecting Support on-line shares 32 topics full of information and resources supporting health promoting activities into a person’s daily routine using film, illustration and photography. The resources and activities have been tried, tested and recommended by people living with dementia and those who support them while also being informed by the developing evidence base on brain health, occupational therapy and dementia rehabilitation.

Allied health professionals have an important role in supporting brain health, by sharing our expertise and public health messages. Allied health professionals can support people to eat well, take part in physical exercise, offer ideas on how to improve sleep, support people to engage in mindfulness and support people to try something new. 

In our interactive website at www.CPCS.online we have called our contribution to brain health “Lifestyle Matters”. Everything is connected. How we feel, what we think and our physical health are all linked and evidence shows that the activities and occupations we engage with on a day to day all impact on our health and wellbeing.

Many factors can affect our brain health and by making tiny adjustments to our lifestyle we can make a difference: maximising how we function and potentially preventing or delaying the development of some types of dementia. When you click on the lifestyle matter folder, you will find things to Chat about, Try, Play and with additional resources in More.

CHAT. We offer ideas to start the conversation about lifestyle including

• What do you do on a day-to-day basis to relax?
  What activities do you find particularly restorative? (having a bath, going for a long walk, spending time with family) How often are you able to these?
• What activities give you a sense of purpose?
• What motivates you to get out of bed on a morning?
• How much of a balance do you think you have between the things you have to do and the things you want to do?
• When did you last try something new? What helps or hinders trying new things?
• How do you connect with others?

TRY. Lifestyle matters and making tiny adjustments and embedding health promoting activities into routines can make a huge difference. This includes taking steps to eat and sleep well, taking time to connect with friends and family, challenging ourselves to learn new things and building in some physical activity throughout the day. Examples and ways of doing this can be found across this website and this theme offers a short introduction that will hopefully help you to begin to think about small changes you can make to keep well by taking steps to maintain good brain health. Try this lifestyle challenge.  See how many elements you can achieve in the next few weeks?

PLAY. As more and more connections are made between brain health and dementia we are seeing an increasing number of online tools and quizzes to help check out your wellbeing. You will find some here

MORE. In this section you can read about ways to keep your brain healthy including the work of colleagues at Brain Health Scotland. To further your support your brain health, why not try the brain health quiz https://brainhealthplan.brainhealth.scot/start

Related topics:

Have a look at our other topics that support good brain health.

Friendship

Many of the activities we take part in are shared with others. It is through friendships that we give and receive support, share these meaningful activities and develop valued roles. Activities in this topic help you to identify some of the friendships and broader support mechanisms you currently draw on and explore ways to maintain existing friendships as well as develop new ones.

Physical Activity

There is a close relationship between physical health and emotional and brain health. Building in some form of physical activity in our everyday routines can support wellbeing, offering a good source of exercise and a way to channel energy in a positive way.

Relaxation

Maintaining some kind of balance and finding time to relax is important. Stress not only impacts on emotional wellbeing it can also affect memory and physical health. These activities promote relaxation.

Dining

A balanced healthy diet is important to keeping mentally and physically well. In this topic we think about the importance of establishing mealtime routines and ways of making dining into a meaningful activity. 

Sleep

A good night’s sleep is important for physical and emotional wellbeing. Over a lifetime our sleep patterns and the amount of sleep we need will change. However dementia can also significantly impact on these patterns. These activities invite you to think about sleep and offer some suggestions of how to get a good night’s rest. 

A webinar series: Occupational Therapy & Dementia. Promoting Inclusion, Rights and Opportunities for People Living With Dementia

Person, Environment and OCCUPATION. #ROARdementia

INTRODUCTION

Occupational therapists work to enable people and communities to live their best lives. They work with people of all ages, focusing on the ways in which time spent influences health and well-being, this could be playing sport, through going to work and or a caring for others. But perhaps most importantly, occupational therapists focus on the areas which are identified by people as most important to them, working further to support and enable the person to lead a purposeful, fulfilling life. Irrespective of practice setting, occupational therapists have a vital role to play in public health promotion, including  dementia risk reduction across the life span. More widely the profession are experts in advocating the right to occupation (what we want, need, and must do as part of our everyday lives) to empower people living with dementia, and those who support them, to maintain and sustain a positive life for longer.

This framed our ambition to come together as co-editors of a new publication “Occupational therapy and dementia: promoting inclusion and opportunities for people living with dementia”. Over forty co-authors have contributed to this book and their generosity and willingness to share their expertise from both within and beyond the profession of occupational therapy has been overwhelming.

Book content aims to share our ambition to inspire occupational therapists of today and tomorrow, to be future leaders, innovators, researchers, and rights-based practitioners in dementia. It does so by highlighting examples of ground-breaking work by occupational therapists and inter-professional colleagues, that we hope will inspire, challenge and encourage readers to be a rights-based practitioner. Each chapter in the textbook offers examples of how and in what way occupational therapists (potentially others also), can respond to and reflect on, a human rights-based approach to dementia practice. To highlight ideas and examples of content included in the book, we have organised three free webinars, which follow the structure of the text; person, environment and occupation.

WEBINAR SERIES: OCCUPATION 7^TH May at 3pm BST.

The structure of the textbook is framed by the themes of ‘person’, ‘environment’ and ‘occupation’ and we decided as editors to support each of these themes over 3 webinars so you can hear first-hand from some of those who contributed.

The third and final webinar is on the 7^{th of} May at 3pm BST, focusing on the important theme of OCCUPATION.

You can join us by click on the link at 3pm on the 7^th May 2024.

Join Zoom Meeting

https://plymouth.zoom.us/j/95750732131?pwd=OTMyRVBaMUhmbTI0eGJtNnFjbGR4UT09

At our third webinar you will meet all four editors and hear from authors who contributed to:

Chapter 13. The Pool Activity Level (PAL) Instrument (Jackie Pool, Lix Copley and Sophie Dickinson)

Chapter 14. Occupational Therapy Home Based Memory Rehabilitation (OTHBMR) (Alison McKean, Mary McGrath and Gillian Gowran)

Chapter 16. Working with People with Dementia and their Caregivers (Caroline Kate Keefe, Alison McKean, Jill Cigliana, Kari Burch and Catherine Verrier Piersol)

Chapter 17. Challenges and Opportunities in Occupational Therapy Research (Jennifer Wenborn and Alison Warren)

Keep in Touch

Fiona, Alison, Elaine, and Lyn can be found through Twitter, now known as X. If interested in further supporting our conversation with occupational therapists, consider using the #ROARdementia acronym to reach out via X/twitter or Instagram.

f.maclean@napier.ac.uk

Alison.Warren@plymouth.ac.uk

ehunter@alzscot.org

We hope you can join us on the 7^th May 2024 at 3pm.

Lessons Learned as an Art Therapy Trainee

As I come to the end of my journey as an art therapist trainee, I have learned various skills and techniques that shaped my understanding and practice when working with people with dementia. Here are the top five lessons gained from my placement experience.

First and foremost, I understand the significance of building and warming up the therapeutic relationship. Creating a safe space for clients extends beyond the physical surroundings, it involves establishing clear time boundaries. To enhance this, I make it a practice to gently remind the client when there are only 5 minutes remaining in our session. Trusting the process is vital; change may unfold gradually when you consistently maintain the same time and space within the therapeutic setting. Besides, each session begins with a transitional period, allowing clients to shift from being alone to connection. It is a crucial foundation for the therapeutic work that lies ahead.

Another lesson I have gained is the importance of fostering a client-led environment, where we respond to what the clients bring into a supported setting. Some individuals with dementia express a desire for sensory experiences therefore, I introduced food ingredients as a creative medium. This adjustment not only catered to their sensory needs but also reinforced the idea that the art therapy space is one where their individual need is acknowledged and embraced. Importantly, it ensures they can express themselves in a secure environment.

Moreover, I’ve come to appreciate the profound impact of attachment in therapy. Attachment is one of the psychological needs of people with dementia in Tom Kitwood’s framework. When working with people with dementia, physical touch plays a crucial role in fostering a sense of bonding. A shared dance during the music therapy group or a handshake at the end of therapy session served as bridges, allowing the clients to feel a connection that transcended the boundaries of verbal communication. At the same time, it is essential to attune with the client, respecting their preferences regarding physical touch and acknowledging their choice to engage in such connections.

Utilizing music to art therapy emerged as my fourth valuable lesson. As I learned in university, the way the brain changes in Alzheimer’s disease does not seem to match up much with the part of the brain responsible for remembering music. Therefore, people who are living with dementia frequently maintain the capacity to recall and remember music. Using music that resonates with the client during art therapy sessions is crucial to motivate their active participation. Moreover, I found that music is a powerful tool to soothe anxieties or frustration, allowing clients to delve deeper into the creative process. Therefore, the intertwining of art and music can motivate clients, making them more willing to participate in the therapy session. I have experimented with integrating visual art and music by synchronizing the drawings with the rhythm of a song. This approach enhances the client’s willingness to participate with the art materials.

Lastly, I have found that individuals with advanced dementia possess the capacity to form new and positive relationships. Despite the challenges that advanced dementia may post across various aspects of their lives, the potential for cultivating positive connections remains. They can convey their feelings through non-verbal means, such as smiling joyfully or seeking connection through gestures. Being present and connecting with the client is crucial, and they can sense it. In my perspective, when engaging in art therapy with people with dementia, the objective is not to provide training, but rather to enrich their overall quality of life.

Discussion questions:

Have you ever participated in any art therapy session or witnessed its impact on someone you know? Share your experience and thoughts on how creative expression can contribute to well-being.

Before reading this blog, what was your perception of individuals with dementia? How does the blog challenge or reshape your understanding of the potential for positive experiences through art therapy?

Contributor

I’m Kwan Yiu Wong (Kylie) who previously worked as a social worker in Hong Kong at an elderly centre serving individuals with dementia. Currently, I am enrolled in the MSc Art Psychotherapy program at Queen Margaret University, and I am undergoing my placement in an NHS ward dedicated to people with dementia.

Disclaimer: The view expressed in the above blog are solely my own opinions and do not represent the stance of QMU, NHS or any of my academic work. However my placement provider was aware and supported me writing this blog.