Q&A with Alison McKean on her role as AHP Project Lead in Post Diagnostic Support in Dementia

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  1. Who is Alison and what matters to you as an individual to keep you healthy, active and independent?

My name is Alison McKean and I’m currently on a part-time secondment as the Alzheimer Scotland Allied Health Professional (AHP) Project Lead in Post Diagnostic Support in Dementia.  I’m originally from the Orkney Islands and apparently still have my accent, I often get asked about this after presentations! I also work as an Occupational Therapist in Dumfries & Galloway, in addition to my secondment and have worked in the field of dementia care for 16 years.

Anyone who knows me will know that I’m slightly obsessed with running and that is what keeps me healthy, active and independent. I’m currently training for the West Highland Way race in June, which at 95 miles is by far the biggest running challenge I have undertaken so far.  In the picture below are my two running companions and we spend many hours in the local forests, which we’re very lucky to have on our doorstep.  This is where I spend a lot of time reflecting on the work I am carrying out.

Ruby and Scapa at Mabie Forest

Ruby and Scapa at Mabie Forest

 

  1. How would you describe your work as an AHP National Lead and what is the aim of the role?

Firstly, I’ll go back in my career to several years ago when I was working as an Occupational Therapist with a lady who had been living with dementia for a number of years. I’ll always remember her family saying to me “we wish we had known about this Service years ago.”   This got me thinking about how many other people living with dementia and their families are in the same boat, not just in relation to occupational therapy but also the other AHP Groups.

I knew how much the AHPs could also offer people in the early stages of their dementia journey but recognised that often people with dementia and their families were not getting access to us.  My work as AHP National Lead is around developing new ways of working, in partnership, to enable people with dementia and their families to have access to the support of the AHPs at the right time, in order to build resilience and enable them to live well with dementia.

The work is exciting and is always evolving, it is amazing how much can be achieved by having the right conversations with the right people who all have a passion for improvements in dementia care. I am grateful to all the people who have supported this work and what inspires me is thinking back to that visit from several years ago.

  1. With regard to the AHP profile in working with people living with dementia, who should AHP’s be engaging with and what should their key message be?

The key message is that the AHPs have the knowledge and skills to enable people to self manage and live well with dementia for as long as possible. Therefore the AHPs need to continue to engage with people with dementia and their families and carers, the Dementia Link Workers, the Primary Care Practice Teams and each other. If we can all work in partnership, this will achieve the best outcomes for people with dementia.

  1. How do you think AHP’s should raise their profile in dementia care and how important is sharing and spreading good practice?

From carrying out a large piece of national scoping work with the Alzheimer Scotland Dementia Link Workers and the AHPs, it was evident that there was lots of good work already being carried out. However it was clear that the AHPs felt that they could be doing more when people are in the post diagnostic phase.  The AHPs need to continue to identify their best interventions for people with dementia and build on our current evidence base.

AHPs are renowned for being modest and although I myself have never been keen on giving presentations, to put it mildly(!), an important part of this role is sharing the work I am doing. I had the opportunity to present my work at the Alzheimer Europe Conference in Slovenia last year.  Whilst I was in my usual pre-presentation nervous state, Jim Pearson, Director of Policy, Alzheimer Scotland, said to me, “you’ve got a great story to tell, so just tell it”. The session went really well, resulting in new connections and ideas.  I continue to remind myself of the story and the importance of sharing and spreading it.  If I can do it, anyone can!

Just arrived in Slovenia with colleagues from Scotland

Just arrived in Slovenia with colleagues from Scotland

  1. If you could give one piece of advice to a newly qualified AHP, what would it be?

If you have an idea or feel that something could be done better, no matter how small it might seem, do something about it, tell someone and use your determination to see it through. Get out there and work on your story as an allied health professional, you never know where it might lead.

Participating in the 42 mile ‘Devil O The Highlands’ Footrace 2015

Participating in the 42 mile ‘Devil O The Highlands’ Footrace 2015

To find out more about this work you can see all our work on this community of practice: http://www.knowledge.scot.nhs.uk/ahpcommunity/ndp-workstreams/dementia.aspx

It’s always inspiring to hear about how the AHPs have made a difference to people in the early stages of their dementia journey – have you got any stories you could share with me?

alison

Alison McKean

Alzheimer Scotland AHP Project Lead, Post Diagnostic Support

I am an Occupational Therapist who has worked in the field of dementia for over 14 years.  Over that time, I have seen many changes and am passionate about ongoing developments in Dementia Care.  I am delighted to have recently commenced a part time secondment as the Alzheimer Scotland AHP Project Lead in Post Diagnostic Support.

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Sharing our success

Occupational therapy assessment clinic in Fife

Development of the occupational therapy clinic

Increasing rates of referrals, people waiting for treatment, travel time, staff vacancies were just a few of the triggers to lead staff in the older adult mental health occupational therapy service in Fife to say:

We are not having people waiting 4-5 months for an occupational therapy assessment

We were also acutely aware that waiting months for an assessment was resulting in people with a cognitive impairment/dementia having deteriorated over this time, increase in stress and anxiety on carers and families as well as not having accessed other services and supports that they could have been receiving. This was not a positive outcome for people living with dementia, their families or the occupational therapy staff.

We considered a number of solutions to this issue, but all of them had an adverse effect on other parts of the service. So in a room covered in “post it’s” with various ideas and suggestions plastered across the walls – the Cognitive and Functional assessment clinic was born.

The solution, simple really, we invited people to the occupational therapy service to undertake functional occupation focussed assessments which were:

Claudia Allen Screening tool: This cognitive assessment tool measures global cognitive processing capacities, learning potential, and performance abilities.

Occupational Self-Assessment (OSA): The OSA is a tool that facilitates client-centred therapy and reflects the uniqueness of each person’s values and needs. The OSA self-report and planning forms assist the client in establishing priorities for change and identifying goals for occupational therapy.

Kitchen assessment:

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We had 3 members of staff for each clinic, 2 occupational therapists and 1 member of clinical support staff. The occupational therapists carried out the standardised assessments and the clinical support member of staff carried out the OSA.

We carried out a pilot of the clinic with the grateful assistance of some volunteer service users and identified that each assessment took 30 minutes to complete. Therefore, the full assessment process took 1.5 hours. We received positive feedback from the people who we worked with during the pilot stage who were comfortable attending an occupational therapy clinic within the hospital or seeing more than one therapist which had been an initial concern for us.

“An Occupational Therapy Clinic” 7 things you need to know

  1. We treated more people in a day, offering 3 appointments at one time over 4 sessions from 9:30am-11am, 11:30am-1pm, 1:30pm-3:00pm and 3:30pm-5:00pm.
  2. We reduced the length of time people were waiting to be seen by an occupational therapist to a month.
  3. We utilised the skills of our occupational therapy staff more effectively.
  4. We had the opportunity to assess people quicker allowing us the chance to signpost to services that people thought would be helpful, make referrals to other agencies more timely or engage the person in occupational therapy sooner if required.
  5. We linked people to the post diagnostic support service in Fife if they were not already receiving support from them.
  6. We worked with carers. We invited carers to attend the occupational therapy clinic if they wished and a member of staff was available to speak with them, to offer support, advice or information which all carers who attended found very useful.
  7. It is an award winning service which we highlight in the section on “what’s next”

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What’s next?

This service was a “win win” for all concerned. The Occupational Therapy assessment clinics are now running across Fife in the Mental Health Occupational Therapy service as standard clinical practice.

We are currently planning to pilot an extended AHP assessment clinic that will include physiotherapy, mobility and falls assessments, with the hope that this prevents unnecessary falls and identifies people who will benefit from targeted intervention earlier.

NHS Fife Occupational Therapy Cognitive and Functional Assessment clinic was recognised at the Advancing Healthcare Awards in London in 2015. Winning the category for maximising resources for success, sponsored by the Department of Health, Social Services and Public Safety, Northern Ireland Award and we are going to be sharing the experience of developing the clinic at the AHP national conference in November this year as we have been invited to do a presentation and workshop session for delegates.

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There was excellent evidence of service user involvement and leadership skills were very evident in bringing the team along the change process.”

As a service, we feel very strongly that it is important that as AHP’s we constantly challenge how we work and strive to make our services more efficient, relevant and accessible to the benefit of carers and service users: the challenge for us all continues and we are always developing the occupational therapy services in Fife to be innovative, more patient centred, effective and delivered to a high quality. The assessment clinic is just one example of innovation and creative thinking which has been successful for all.

On reflection

Thank you for reading my blog post and I would welcome any comments

  • I would also invite to share, if you are an allied health professional, what have you done do enable people living with dementia to directly access your service.
  • If you are living with dementia or a family member, what service from an allied health professional would you like access to?

Useful resources

You can read more about this work on pages 27-28 in the Alzheimer Scotland publication http://www.knowledge.scot.nhs.uk/media/CLT/ResourceUploads/4052050/02295%20AHP%20report%20on%20post-diagnostic%20support.pdf

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For more information on the Chamberlain Dunn awards 2015, follow this link http://www.chamberlaindunn.com/AHA/documents/AHAAwards2015Compendium.pdf

I am proud to also share a picture of my family supporting everyone ‘Talking About Dementia’ – Lynn

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Pic 6Lynn Dorman

Occupational Therapy Professional Manager

@dorman_lynn

I work in NHS Fife Mental Health Occupational Therapy Service where I manage the adult and older adult service across 3 clinical hubs. I have been an Occupational Therapist for 20 years and spent most of that time working older adult mental health services so am passionate about improving services for people with dementia and their families, hence the development of the assessment clinic.

Dr Norma Clark

AHP Clinical Services Manager and Lead OT

@normaAHPMH

I work in NHS Fife Mental Health Occupational Therapy service as the Lead OT. I am also an AHP Clinical Services manager within Fife Mental Health Service. I am always thinking of creative an innovative ways to improve the quality and efficiency of services for people with mental health problems in Fife and together with Lynn, came up with the idea of the cognitive and functional assessment clinic.

“A blog a day blether” for #DAW2015

Allied Health Professionals Q&A

Day 5 “Ask a Speech & Language Therapist”

5th June will be by Joy @joysltdem

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Communication and eating, drinking and swallowing are fundamental to our well-being, and it is the speech and language therapist’s role to help with these skills for people with dementia at all stages of the illness. The following questions highlight many common areas of difficulty and I hope that the answers provide people with ideas on how to work around the challenges.

Question 1 – Do speech and language therapists work with people to learn to sign some words when speech is going?

 

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Answer – This would be very unusual, unless the person had signed previously. It is recognised that it is generally difficult to learn new skills. However, increased use of body language and natural gesture is fully recommended. Most of us have highly developed skills at reading body language that we developed as babies and toddlers before we even started speaking. It is likely that the person with dementia is reading body language (which includes facial expression, tone of voice, posture etc.) long after language comprehension has deteriorated. It is therefore important to be aware of what you are communicating non verbally and to enhance natural gesture to facilitate comprehension. The person with dementia can also be encouraged to increase their use of gesture to aid their expression when words are difficult to find. Playing miming games such as charades may be a way of encouraging this skill.

Question 2 –My wife has difficulty with her speech. She gets very confused and often uses words that make no sense. She then gets angry with me when I don’t understand what she wants and sometimes throws things at me. I am weary and at times quite frightened. I have no idea how to help her tell me what she wants.

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Answer – this is a difficult one. It is obviously important to reduce frustration because more effective communication is always achieved in calmer settings.  Firstly, always ensure that distractors such as television, radios, barking dogs, crying grandchildren etc., etc. are reduced to an absolute minimum. One to one communication is always more likely to be effective.

Then I would recommend acknowledging when you do not understand and posing questions such as ‘are you talking about….. (the doctor?  tea? yesterday?)

Alternatively pick up objects, pictures and say ‘is it this?’ Visual materials help to focus the person and helps them to remember what it is they are trying to talk about.

As in the previous answer, encourage the use of gesture to get messages across.

However, if all this increases frustration and inevitably sometimes this might happen, it is vital to acknowledge that frustration and suggest she comes back to it later. Then try to distract her with another activity or topic.

Question 3 – My wife gets very frustrated when she can’t find words. Should I finish her sentences for her?

Answer – Finishing sentences for people depends very much on individual relationships and there isn’t one stock answer. I recommend that you ask the person whether they would like support on completing sentences and how soon you should ‘jump in’. Be aware that you need to be listening very carefully to be sure that the word you offer is actually what the person is trying to say, because selecting the wrong word can increase frustration.

Question 4 – I am finding my friends have stopped visiting because it is so hard to have a conversation. Is there anything you can suggest which might help?

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Answer- It can often be daunting for friends to continue visiting if they feel conversation is becoming more difficult; however there are several ways that good interactions can still be achieved. Generally speaking, it is better to focus conversation on a tangible object such as a newspaper, photograph, keepsake or newly acquired item from the shops, for example. This is because 1) the focus is taken off the person and put on to the item and 2) the person is more able to keep in mind what the topic of conversation is.

Old photographs are particularly good as very often older memories remain for longer. Remember though that it is not necessary to correct erroneously remembered memories because the focus should be on the quality of the shared interaction and not the truth as you remember it.

Sometimes people find conversation flows more easily if you are both involved in an activity together e.g. arranging flowers, tidying out a drawer etc.  Simply commenting on things such as ‘that is a beautiful flower’ or ‘I had a pen like this once’ may well result in an exchange of comments.

It is important to avoid the use of questions, particularly open-ended ones such as ‘What did you do in the war?’  Even questions that just require a Yes/No response often don’t lead to further conversation easily and should be used as little as possible.

It is also important not to talk too much. Often we fear silence and try to compensate for the reduced conversation from the person with dementia by talking incessantly. Occasional comments and companiable silence, particularly when engaging in some activity is absolutely fine.

Question 5 – My husband has been put on a soft diet and really misses his favourites. Is it ok to bend the rules a bit?

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Answer- There are many different reasons why people are put on a soft (puree diet). It would be very important to discuss with the Speech and Language therapist (SLT) why he was put on this dietary texture in the first place before bending the rules. Modified diets are used to reduce risk of choking and/ or aspiration of food and drink that might lead to chest infections, and it is vital that the level of risk for your husband is fully understood.

SLT’s are always mindful of balancing the risks against quality of life. It is often found that people manage their favourite foods better due to increased stimulation and therefore an informed discussion with your therapist could result in a controlled trial of these foods.

We welcome ideas and comments from our readers about this blog.

Joy HarrisJoy Harris
SLT,Clinical Lead for Dementia, Lothian
@joysltdem

I work in East and Midlothian Psychiatry of Old Age teams seeing people with communication and/ or swallowing problems from the point of diagnosis of Dementia, and at any stage throughout the patient journey as the need arises.

Care about Continence Not just seeing the person… listening to them too!

People often talk about living with dementia as a journey and in many ways I too feel that I have embarked upon a journey of discovery and hopefully understanding.  Working with the Care Inspectorate has given me the opportunity to connect with a whole range of people who have a commitment and passion to change how we deliver care and support to people living with dementia and their families and carers.

I have also had the opportunity to meet and work with the members of the Scottish Dementia Working Group (SDWG) and the National Dementia Carers Action Network (NDCAN). My thinking and attitudes towards people living with dementia and their families and carers have changed significantly over the past two years and with this change comes a feeling that currently we are on the cusp of yet another breakthrough.

Person Centred Care leading to Citizenship

I have always considered myself to work in a very person centred fashion, seeing the person for who they are and the life that has been lived and experienced.  However, if I am honest, I think my expectations for their future was slim. Did I see on-going potential in the person living with dementia? Did I think of people living with dementia as equal citizens with rights? Or was my focus on the losses that the individual had experienced, be that the ability to drive, make decisions, or manage their own self-care. Seeing a person with dementia as citizen means that as a society we need to rethink how we support them to remain engaged and influence the world around them. This is not just best practice but is the right of the individual, not just if we have time, but every time!

Archie Noone from the SDWG recently joined us for a two day event in Stornoway, his contribution was invaluable and influenced the tone and ultimately the learning experience of those who attended. Archie was not there as token gesture, but as a vital component of the day, at the break it was Archie’s contribution that people were talking about and I am sure that it is him people will remember.

Care about Continence, a partnership experience

This was brought home to me very clearly in a recent project that we have been working on in the Care Inspectorate with a wide group of stakeholders.  My colleague Jackie Dennis is the Professional Adviser for Continence. She raised with me the increased rates of incontinence especially within the care home setting. We began to question and explore this and discovered that there was wide variability across services that did not match our expectations. We formed a working group and from day one the voice of the person living with dementia and family carers were an essential part of the conversation.  This has led to the development of a new resource “Care about Continence”.

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On the working group, Archie from SDWG and Christine, Lorna and Emma from NDCAN were joined by representatives from NHS Continence Advisors, Allied Health Professionals, care home staff, Scottish Care and University West of Scotland. We worked together to produce a resource that supports the rights of people with dementia and their carers and also follows best practice and current research.

Listen here to Archie Noone in this 3 minute film talking about his experience of managing his continence needs: http://youtu.be/oln1fW3-hdo

The resource will be launched in March 2015 and will include a useful pocket guide for people living with dementia, their families and friends and staff, as well as a DVD. The guide is written from the perspective of the person who is being supported.  Here is a sneak peak of the key messages.

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This guide is about how you can support ME to:

  • recognise when I need to go to the toilet, making sure I get there on time
  • find the toilet
  • get to the toilet either on my own or with some help
  • use the toilet once I get there
  • adjust my clothing and wash my hands after I have used the toilet
  • find my way out and return to where I want to go.

Staying continent for as long as possible while living with dementia and other long term conditions is something that I want to do, but I might need your help to do this.

It’s the small changes that can really help.

5 key messages

  1. Know me and what’s important in my life and do what’s best for me.
  2. Know me and how I communicate.
  3. What I need to stay continent and how you can help.
  4. Create an environment that supports me to be independent and promotes continence.
  5. Look for every opportunity to promote my continence –Be creative.

Follow this link to a 3 minute film to see Archie Noone get his message across in his own indomitable fashion: http://youtu.be/bToOiCWKrcE

Delivering the right kind of support for people and their families with dementia can only be done if they are fully included at the very start of projects and new models of working. I am immensely proud of this resource and grateful for how it has contributed to my own development. So, thank you to everyone on the group, you are all valued colleagues.  The skills and experiences that everyone brought to the table have truly shaped and influenced this resource.

So next time you are thinking about changing a service, or starting a new group ask yourself are you reflecting what really matters to people living with dementia and their families and carers, and how have you engaged with them?

Follow me on twitter @HeatherAHP and the Care Inspectorate @careinspect

Heather Edwards
Dementia Consultant
@HeatherAHP

I joined the Care Inspectorate in January 2013 as a Dementia Consultant covering all of Scotland. My role is to promote improvement in dementia care and support in all registered care services, making sure that the voice of the person with dementia and their families and carers is at the heart of all that we do. I am an occupational therapist by profession with over 25 years experience working with older people both here in Scotland and America.