Every September it is World Alzheimer’sMonth where people come together from all around the world to raise awareness and to challenge the stigma that persists around dementia. September 2021 marks the 10th year of this vital global awareness raising campaign. The focus of this year’s World Alzheimer’s Month campaign is diagnosis, shining a light on the warning signs of dementia and encouraging people to seek out information, advice and support. The theme for the campaign is Know Dementia, Know Alzheimer’sand it is all about the power of knowledge. In seeking out information, advice and support, and potentially a diagnosis, people are better able to prepare, to plan and to adapt.
Allied Health Professionals in Scotland have been working collectively to share their knowledge and offer support in a range of forums and formats. The majority you can find at www.alzscot.org/ahpresources.
Today we are hosting an interactive and practical workshop looking to connect with people living with dementia and people who support a person with dementia. We are sharing ideas and tips on a range of topics including activities at home, eating well, communication, foot care at home, falls prevention and enabling everyday environments. All developed by a range of Allied Health Professionals including dietitians, occupational therapists, physiotherapists, podiatrists and speech and language therapists. The workshop is on today at 2.30pm and you can find the link at @alzscot. However, if you cannot join us on the day but have a question on one of the themes you can email us AHPDementia@alzscot.org. In today’s blog, I am sharing a few of the top tips being shared but please post us a question or share your own top tip in this the blog or tweet us at @AHPDementia
Today Rebecca is launching a new resource developed by our speech and language therapists called Tips for Talking and we will share a follow up blog on the content of the work and how to access the resource. The resource highlights the need for
Aphasia friendly language
Photos to bring the message to life
Addressed to the person (though family and carers are encouraged to read it too)
Look out for next week’s blog, where Natalie and I will be sharing our collective vision on the AHP offer in both Scotland and Wales.
Working with hospital volunteers to explore meaningful activity for patients with dementia.
Our final placement of 3rd year was in Dumfries and Galloway Royal Infirmary, working with people with dementia and exploring the benefits of meaningful activity and how it could be facilitated within an acute ward environment.
An aim of our placement was to create resources that could be easily used within the ward, accounting for the varying interests of individuals and maintaining that the activities could be both stimulating and enjoyable to engage with. To support this, we considered the environment of the ward, and whether anything could be done within it to enable the patients to engage in activity.
Small but effective environmental changes were made to facilitate meaningful activity and wellbeing. The introduction of wayfinding helped support orientation and promoted mobility by encouraging patients to walk from their room to the seating areas. We were able to remove some of the clinical information and rearranged furniture to create a more welcoming seating area. A further seating area was added to another space within the ward. These new seating areas helped promote activity and patients reported that they enjoyed using the space.
During the placement we worked closely with the hospital volunteers. One aspect of their role was to use meaningful activity with patients with dementia, which presented a perfect opportunity for us to learn from each other and produce a range of activity-based resources that they could easily use within their role.
As we delved further into the placement, we began to consider the question of would these activities carry on after we left, and if they did, in what capacity? While on placement we were of course able to discuss the benefits of meaningful activities for people with dementia, linking this to core concepts and theories of Occupational Therapy. But knowing our placement was only 7 weeks long, we wanted to create something that could support a degree of longevity of the use of meaningful activity.
These conversations led us to the idea of creating videos that could be used to support volunteers to understand the benefits of meaningful activity to an individual’s health and well being. The video we produced includes details of the theory behind the activities we had been working on, which the volunteers fed back was interesting to know more about the ‘why’ of what they were doing. Have a look at the video here and tell us what you think
“AMAZING presentation! One of the best I’ve been to in a very long time”.
In February 2021, 661 people joined us live during our AHP Dementia webinar on stairlifts and cognitive impairment. You can listen again to the AHP dementia webinar by Ailsa Dow, Dr Charlie Chung and Gail Hogg who talk about their project that involved occupational therapists from across Fife here
This webinar is normally delivered as a workshop so we were only able to offer you a snapshot of this great project.
During the webinar, participants asked lots of great questions and today we are posting the replies from our webinar hosts. Please leave any further comments on this blog post for Ailsa, Charlie and Gail to continue the conversation with you at @DowAilsa@CharlieChung90@gail_hogg1 and @AHPDementia.
For people, who for instance do not have the basic knowledge of things being tested how are tests adjusted? For example, elderly lady from BAME community who didn’t attend school past day age 10. Are there additional tests?
Ailsa answered, The Allen Cognitive Level Screen would be a very appropriate tool for individuals who have had very limited education as it does not rely on knowledge of numeracy and language.
Gail added, the Allen Cognitive Level Screening tool is a practical tool, therefore uses visual and verbal instructions and prompts rather than reading or writing tasks, so I think it taps into some of the community life skills and would be appropriate to use.
With final comments for Charlie. If a person cannot undertake the ACLS, e.g. hand weakness, very low vision, or if we need to know more about the cognitive profile of someone who has not scored at the required level on the ACLS, then the cognitive screens can be very informative. The first action should be to determine if there has been a cultural/language validation of the test, and if so, find and use that version. We have referenced a few below. Where there is a possibility of limited formal education, it is good practice to ask open questions about what the person likes to do for enjoyment. If they reply that they like reading, etc. it opens the door for asking more detailed questions, e.g. magazines, newspapers, books? What kind of books? Reading okay before the stroke? Numbers okay? Then with this additional information, the test findings can be interpreted with greater validity. It is important for all of us to keep in mind that the tests provide information contributing to the overall assessment and should not be used as a stand-alone, definitive measure of a person’s potential to learn how to use a stairlift safely.
Mirza, N. P. (2018). Cultural validation of the Addenbrooke’s Cognitive Examination III Urdu for the British Urduspeaking population: a qualitative assessment using cognitive interviewing. BMJ Open.
Pan, F.-F. W.-H. (2021). Validation of the Chinese version of Addenbrooke’s cognitive examination III for detecting mild cognitive impairment. Aging & Mental Health.
Takenoshita, S. T. (2019). Validation of Addenbrooke’s cognitive examination III for detecting mild cognitive impairment and dementia in Japan. BMC Geriatrics.
What about long term needs, ok someone is there to monitor stair lift use…who monitors that if the person to supervise is no longer there? How to you review stair lift safely?
Ailsa replied, this is where a clearly documented risk management plan is required. The plan should be discussed and agreed with caregivers/family that their responsibility is to notify the social care occupational therapy service of any changes to support. We also place service users on a review pending list and set a time scale to review the safe use of the stairlift and monitor the support provided.
How do you establish what aspect of the memory process might be challenged before the stair lift is installed?
Ailsa answered, through your use of standardised cognitive screening you can determine the person’s cognitive profile. Analysis beyond the total score is required by looking at the cognitive domains in the assessment tool and where the person is struggling. For example, the Allen Cognitive Level Screen assesses the person’s ability to follow specific instruction, sustain their attention to the task, problem-solving ability, and load on working memory. Sections of the ACE focus on attention, working memory and visual spatial attention. All these are directly linked to safe operation of a stairlift. It is also important to anticipate that the person may have capacity to learn through practice and repetition which will embed it into their procedural memory.
Charlie added, it is also important to also gather information on how the person is managing in their daily life to complement the assessment findings. Asking the person and family about any changes to the ability to learn how to use new things, e.g. a microwave, a new TV remote, etc. can add to the standardised assessment information on the extent of new learning.
How do you work around the 10-year legal grant process? In Fife how is stairlifts funded? Are they all equipment? Have Fife council funded LACLS?
Ailsa’s replied, in Fife, stairlifts are not funded via the Disabled Facilities Grant or Home Improvement Grant but via capital budget for lift installations. The stairlift remains the property of the Fife Council after installation. Fife Council takes responsibility to maintain and service the lifts and arranges removal when no longer required or the person becomes too unsafe to use it despite control measures already put in place.
Regarding the Allen Cognitive Level Screen, Fife Council Occupational Therapy Service funded the tools and instruction manuals for each local team.
Can we deduce people’s PADL abilities from LACL given that these are often over learned activities?
Gail replied, I think we must bear in mind that the LACLs is a screening tool that is used to provide a guide to a person’s current level of function and should always be used in conjunction with other assessments and observations. I think it could be used to establish an overview of a person’s current level of functioning in completion of specific tasks, including PADLs.
Do you have any articles evaluating the use of the LACLS in relation to stair lifts use specifically?
A literature search was undertaken at the start of the project and we could not find any articles. As far as we are aware, there has been no previous research or articles directly linking cognitive screening assessments with stairlift use so this is new territory and a truly innovative project! We have worked closely with mental health occupational therapists’s to translate the existing cognitive levels in relation to functional activities of the Allen Cognitive Level Screen to stair lift use. We would welcome this as a research proposal.
How will you share to people who don’t use Twitter or FaceBook?
We will share the replies with all our local networks and hope that everyone is able to share this innovative project and maybe consider something similar in their local area.
We invited you all at the end of each webinar to share something you might try out or change following today’s webinar. Here are some of your replies and we wish you every success in following up your ideas and inspirations that you shared with us.
Alternative standardised assessments relevant to occupational performance. The need to carry out robust assessments of all clients referred to our service.
The idea of using cognitive assessments as part of my assessment tool kit
That an individual with Dementia should always be given a chance for assessment and stair lift considered
A diagnosis of dementia should not be considered as an immediate barrier to the safe use of a stairlift.
The general knowledge about the need to present the information to the person with dementia in a particular way, depending on their impairment.
The more comprehensive understanding of what memory and cognition are constructed of and given this kaleidoscope, I shall aim to think more creatively and laterally when assessing my clients regarding stairlifts but also many other aspects of their daily life and function.
The webinar will help to inform discussions in my service on the topic and our practice.
A greater understanding of factors contributing to Risk Enablement, shared language to use with person and family, generally regards abilities focussed support
The webinar has given me more confidence in my belief that each situation should be looked at individually and a diagnosis of dementia should not automatically rule out use of a stairlift. There was useful information about what should be considered when carrying out the assessment.
I found the cognitive screening tools and what they actually test so interesting. I sometimes find it hard to explain what I’ve either observed or experienced. The theory of cognition and concepts like procedural learning and repetition made this all very applicable and relevant to my day to day practice.
A greater understanding of factors contributing to risk-enablement, a shared language to use with the person and family, generally regard abilities-focussed support.
I would really like to have an evidence-based approach in our area when assessing clients with cognitive impairments for stairlifts. I will discuss this further with the team and managers to see if it something that can be embedded into our practice.
There are lots of things I am passionate about, but three of my key passions are:
The importance of occupation- what it means to people, what meaningful occupation is and how we get others to understand what occupational therapists mean by occupation and meaningful occupation
What is fair, just, and right
How we can better support people living with dementia
Over the last five years I have worked with care homes, both in Australia and Scotland, supporting people living with dementia and their care staff, particularly people who are distressed and who staff are struggling to support.
Reasons for referral are varied, but it became more and more obvious to me that frequently, distress was occurring because the person was trying to do something meaningful and were often being prevented from doing it.
A really good example would be someone trying to leave a care home to go home, to a house that they hadn’t lived in for years, to see their parents, who had died many years before. Supporting staff to understand the person’s history, what is meaningful for the person and how they can help meet a need that on the surface may feel impossible, requires a shift in staff understanding and approach.
The easiest way I have found to help staff to gain an understanding is to explore the things that they do, that are important and meaningful to them, and then to consider how they would feel if for example – those things were no longer possible- that someone else prevented them from doing them because it wasn’t safe- did it for them -or tried to distract them with something that had no personal relevance.
Not being able to do what we want or need to do, when we want to do it, in a way that we want to do it, feels punitive. Lockdown has also, to some extent, given us all a small taste of what it is like when just some of the meaningful things are not possible.
Considering Occupation from the perspective of rights makes a lot of sense to me. From a legal perspective, there is no Human right to ‘Do’- (Watch this space as this is an area I think we could work on influencing), but using a rights based, Occupation Centred approach, can help to shift thinking.
Without knowing what is important to someone, it is impossible to support their meaningful occupation. Building a rich picture of the persons history, their likes and dislikes, their family, their work history, and all the things they enjoy doing or that are important to them is vital if staff are going to meet their occupational needs, so this has to be the starting point.
Adapting the environment and approaches to enable as much independence as possible in all the things someone wants needs or has to do can help people to retain skills. For example, supporting someone who always did the dishes after the meal to continue to do this by supporting access to the kitchen or providing a bowl of warm soapy water, can make a real difference (even if they are put in a dishwasher later when the person has left).
Person centred environments is a whole subject in itself and I have recently developed training for care homes in the borders, but I am keen to build on this area to support a shift in the way that people living with dementia are supported in care and I am hoping that, with the support of the RCOT Specialist Section for Older People, to develop this work further.
Finally, to go back to the example earlier of someone trying to go home, if you understand that the meaningful and important thing for that person at that times is to get home, where they know they are safe, loved, supported and in a familiar space, then offering a cup of tea or telling the person that they now live here, won’t work.
Validating the person’s feelings by saying something like ‘you seem really upset, it must feel horrible to not be at home, can you tell me about it and I will see what I can do to help you’ then asking the person if they want to go somewhere quiet to talk about it, may help to redirect them to a space they may feel safer in such as their room (providing it has familiar objects and photographs in). Also consider touch, a reassuring hand and eye contact can be comforting. Looking at familiar ‘meaningful’ items or photographs and talking about the loved ones they are missing or supporting them to have contact with loved ones such as other family members can make the difference.
If you are an RCOT Specialist Section Member, you should be able to listen to a recording of the session and feel free to get in touch if you are interested in collaborating.
Following on from last week’s blog which looked at the positive and negative experiences of the Scottish Dementia Working Group (SDWG) this week’s blog will share with you what the members have learned and their suggestions on how to improve post diagnostic support moving forward.
As we mentioned each person in Scotland is entitled to one year of post diagnostic support that follows a 5 pillar model. “The 5 Pillars Model provides a framework for people living with dementia, their families and carers with the tools, connections, resources and plans to allow them to live as well as possible with dementia and prepare for the future” (Alzheimer’s Scotland). However, we have learnt that the PDS commitment is currently not being achieved. The members voiced that they feel this is disappointing, considering they are individuals who were lucky enough to receive the support. They want to raise awareness about some people are not receiving post diagnostic support.
“You become quite reliant on the support that you get and then your suddenly told you’re being discharged from the support service after a year, if there was a plan put in place for that transition it would be helpful”.
Transitions are an important aspect of life and can be critical for someone continuing on their dementia journey, including coping mechanisms and self-management skills after their post diagnostic support has been completed. With the correct support, and having a focus on helping someone manage the transition towards the end of post diagnostic support would be helpful.
Through discussions with the SDWG, it is clear that what was expected of post diagnostic support, was not always the reality. It was expressed by members that the transition from receiving support to being “discharged from the service” was abrupt and left them feeling suddenly unsupported. For instance, a member was told just 2 weeks prior to discharge that the support would be ending. It was suggested that it would be helpful if there was a transition process in place.
“When we were given the diagnosis, the feet were taken away from us”.
Another aspect of the support that was challenging for some of the members was the lack of planning and communication that was involved. One member in particular, expressed that several appointments were either cancelled or else the health care professional didn’t turn up. When they were finally contacted, it was an unscheduled phone call, interrupting their plans.
Members also expressed that following the diagnosis, there is a period where you may experience denial, and that this may be a time where they do not feel ready to begin receiving their post diagnostic support. However, they are aware that this then uses up their allocated time. Other members voiced that, once given the diagnosis, it feels their feet were taken away from them and felt they would have benefitted from support at this point, but were waiting months before they received contact from a health care professional. It is suggested that being mindful of this, would positively contribute to the overall experience of post diagnostic support, and would support a person-centred approach. On one occasion, the discharge letter did not reflect what support had actually been provided to the member, and the language was unsympathetic to their personal circumstances.
“I think it would be better to manage people’s expectations at the outset”.
Members expressed that it would be useful for a clear outline of the type of support that will be provided. The members felt that knowing the type of support was more important than the timescale. For some, this created a misconception of how much support was going to be offered, when in reality, it was just a few sessions over the course of the year. Members appreciate the high demand and excessive caseloads the staff are experiencing but would suggest that it is made clear the amount of support they will receive and what this would look like. An aspect of post diagnostic support that has not been fulfilled for many members is the personalised support plan. Members felt this would have been beneficial to them and may have offered more clarity and support during the transitioning process.
“Post diagnostic support classing people with dementia all the same, but we are all different. To give everyone the same support is very difficult. Putting everyone in the same boat but we are not”.
As the first year following a diagnosis is already a challenging one, the uncertainty about this support and lack of communication hasn’t helped. However, several members had a positive experience with post diagnostic support, and were told weeks in advance that the support would be coming to an end. Another member expressed that she has since developed friends with some of the health care professionals that provided this support, and is very much appreciative of these friendships. This link worker wouldn’t “take no for an answer, providing high quality support and helped get the member out of a crisis”
The importance of a person being diagnosed with dementia having social connections and supportive family and friends is vital. Social interaction supports brain health and can slow symptoms including deteriorating memory. Sadly, two out of three people living with dementia have lost friends following their diagnosis, which is a time when friendship is valued the most, for comfort, support and to maintain an essence of normality. One of the key aspects of Alzheimer Scotland’s 5 Pillar Model of Post Diagnostic Support is ‘Peer support.’ The aim of this is to get peer support from other people with dementia, their families and carers to help come to terms with the illness and maintain wellbeing and resilience.
Many members were introduced to the Scottish Dementia Working Group by their link workers as part of their post diagnostic support. The members reflected on the peer support aspect of the SDWG. They hope that a similar group is offered to others where they can be themselves and to offer or to seek advice and support from others who are going through a similar journey. The members have voiced that this has been invaluable and provides vital social connections to help balance the challenges that come with a diagnosis. The members believe they could play a vital role in coproducing post diagnostic support with health care professionals. We believe that the SDWG are well-equipped with the right skills and knowledge to contribute to further development of post diagnostic support.
Gill and I would like to say a massive thank you to Wendy Rankin and the members of the SDWG for allowing us to be part of your group during our placement with Alzheimer Scotland. You have been so welcoming, supportive and compassionate towards us and we will be forever grateful to have been a part of your mission to improve dementia care for people in the future.
If you would like to learn more about the Scottish Dementia Working Group you can follow the group on twitter here and also look the SWDG website page here.