Author Archives: Joan Murphy

Connecting people, connecting support

Alsion McKean 1

Many thanks to Elaine Hunter, National Allied Health Professions Consultant with Alzheimer Scotland for this blog

Background

Connecting People, Connecting Support is a new policy document in Scotland and shares  how allied health professionals (AHPs) in Scotland can support people with dementia, their families and carers to live positive, fulfilling and independent lives for as long as possible.

The policy document presents an evidence-informed case to support a biopsychosocial approach to practice for ALL AHPs in Scotland when working with people living with dementia – what we call the AHP approach. The fundamental understanding driving the AHP approach is that people living with dementia CAN benefit from AHP-led interventions.   In this week’s blog we are sharing the AHP contribution to maximising psychological wellbeing.

 Alsion McKean 2

Maximising Psychological Wellbeing

What do we mean by psychological wellbeing?

The central importance of finding ways to communicate (verbal and non-verbal) that work for each individual and which make meaningful connections that may have wide-ranging benefits in relation to overall wellbeing and quality of life is recognised. Psychological interventions of different intensities are reflected to promote emotional health and psychological wellbeing, with the provision of psychological interventions for depression, anxiety, and expressions of stress and distress. This element builds on established AHP psychological interventions and therapies.

Elaine Hunter 3Click on box to enlarge

Why is psychological wellbeing important?

 People with most types of dementia will at times struggle to find the right words or follow a conversation.

  1. Communication difficulty can be exhausting for the person, families and carers
  2. We know that people can often find it difficult to talk about dementia and many people living with dementia experience social isolation
  3. Dementia can have a profound psychological impact and may be linked to feelings of anxiety and depression.
  4. A non-pharmacological therapeutic approach is advocated for the treatment of psychological symptoms and a person-centred stepped-care model of support.

 3 ways allied health professionals CAN maximise psychological wellbeing?  

 1. Maintain and maximise communication

AHPs are aware that optimum communication occurs in environments that are comfortable, where a person can feel relaxed and safe, and when the AHP-led intervention is tailored and individualised. AHPs have experience in training others in conversation skills and cuing strategies, identifying key elements for effective everyday communication and supporting opportunities to practice communication strategies in a social context, helping the person to gain confidence in the interaction. Speech and language therapists can provide personalised communication advice (aimed at, for example, developing communication passports, assessing communication networks and maximising communication opportunities) that is shared with family members to facilitate their communication skills. Where language difficulties present as a primary feature of the dementia, as in primary progressive aphasia, speech and language therapists will carry out assessments to identify specific communication impairments and abilities. Their findings will contribute to the diagnosis and be used to plan therapy and strategies.

 2. Psychological interventions

AHP core psychological skills are unique to each profession and vary according to their undergraduate education and postgraduate development activity. AHP interventions to maximise psychological wellbeing require excellent communication skills and the ability to integrate psychological interventions and psychological therapies into core AHP practice.  A number of approaches based on the psychological understanding of dementia and its effects, including reminiscence approaches, life-story work, anxiety management, and engaging in everyday occupations and activities, will be core to AHPs’ day-to-day practice.

With additional enhanced training opportunities, psychological interventions can also become core to AHP roles and integral to a team approach to a stepped-care model of assessment and intervention. Psychological interventions include motivational interviewing, behavioural activation, mindfulness based cognitive therapy, cognitive stimulation therapy, cognitive rehabilitation and cognitive behavioural therapy. Specific psychological interventions providing individualised, formulation-led interventions in response to stress and distress in dementia, ranging from low-intensity to specialist interventions, can also be within AHP remits.

 3.Psychological therapies

Psychological therapies are highly specialised psychological interventions that include the established AHP disciplines of art psychotherapy and music therapy.

Art psychotherapy creates opportunities for verbal and non-verbal communication by using art to enable people to feel connected to a sense of self, other people and the environment around them. It can support people living with dementia by reducing anxiety and increasing coping skills (Safer & Press, 2011), depending on how interested the person is in art activities, art materials and how they feel about one-to-one or group activities. Art psychotherapy can be particularly helpful for people who find it hard to express their thoughts and feelings verbally, enabling self-expression and enhancing sense of self and personhood.

Music therapy builds on people’s ability to respond to music to develop a therapeutic relationship and facilitate positive changes in emotional wellbeing and communication through engagement in live musical interactions. It has a robust evidence base as an effective, non-pharmacological intervention that can significantly improve and support the mood, alertness and engagement of people with dementia, reduce the use of medication, and help to manage and reduce agitation, isolation, depression and anxiety (Ridder et al., 2013).

These art-based therapies are particularly helpful when people find their emotions are too confusing to express verbally, when verbal communication is difficult or when words are not enough.

Supervision for the AHP professions is integral to all of the interventions.

On reflection

Thank you for taking the time to read this blog and we would like to know

  • As an AHP, how do you currently support people living with dementia to maximise the persons psychological wellbeing?
  • As person living with dementia, what support would you like to receive from allied health professionals to maximise your psychological wellbeing?
  • As family carer, what support would you like to receive from allied health professionals to maximise your psychological wellbeing?

We look forward to hearing from you.

Email me at EHunter@Alzscot.org

References

There are references supporting this text which you will find in the original policy document and can be viewed here  https://www.alzscot.org/assets/0002/7356/AHP_Report_2017_WEB.pdf with all the evidence informing the policy available at www.alzscot.org/ahp

 

Advantages of GDPR !

managing_time_yellow

Apart from the necessity of fulfilling the requirements of the General Data Protection Regulation which has to be completed by 25th May, I have been pondering on other advantages of complying with the GDPR.

Here at Talking Mats we are all going through files, bagging up paper for shredding, deleting data files on our master computer and preparing text to send to all our customers and contacts to make sure we only hold information that is adequate and relevant.The first advantage for us is that it’s a good way to re-establish contact with people.

I’ve been given the task of going through all the research data and have ploughed through 16 drawers of research data starting in 1992!  Way back then I worked with a wonderful professor who was keen to hold onto all our raw data just in case we wanted to check or replicate anything. Its all been under lock and key but the time has come to bite the bullet and get rid of it.  I found this to be not only nostalgic but also emotional – all those fantastic participants who gave us their time and insights.

Its also been cathartic because as well as filling bags for shredding I am smashing up discs of video footage. We filmed lots of people with a range of communication difficulties using Talking Mats to compare with the same conversations without Talking Mats to analyse any differences. So… another big advantage is that I’ve destroyed all evidence of my dodgy hair cuts throughout the years!!

hairdresser

I counted 41 completed projects going from the very first one in 1992 which was a demographic survey of people who used AAC (Augmentative and Alternative Communication) systems in Scotland. In 1998 the Gannochy Trust funded the original project where Talking Mats was born Gannoch Final report. We then went on to carry out a wide range of projects which include working with people with Motor Neuron Disease, Stroke, Learning Disability, Children with Additional Support Needs, people living with Dementia to name but a few. The website contains the final reports on all our projects and in looking back at them I am also very proud of the good quality research the team here at Talking Mats has carried out.

Many others are now doing projects using Talking Mats but I leave it to them to organise their own GDPR and hope they also find the process worthwhile and rewarding and not just seen as a chore to be done.

Thinking Ahead: supporting people to plan for the future

transitions

This new resource has been developed by Strathcarron Hospice and Talking Mats to help people with advanced illness or long term conditions to think ahead and plan for the future.

It consists of a booklet and 3 topic symbol sets: Affairs; Care/treatment; Personal values

3 topics
It can be used to help people have conversations about:
• the extent to which their personal affairs are sorted;
• what they would or would not consider about future treatments and care;
• what is going well/not going well in relation to their personal values

It is widely recognised that having discussions about end of life issues can enable people to remain in control for longer and help them to identify the care and support they need and want as they approach death. In spite of this, in Scotland:

  • 74% of people have not discussed what their wishes would be if they did not have long to live
  • 79% of people don’t have any written plans for their end of life care, financial wishes or funeral plans
  • Only 35% of people have written a Will

It can sometimes be difficult for people to start conversations about planning for end of life and people this is exacerbated if people have specific difficulties communicating their thoughts and feelings because of symptoms, fatigue and emotional factors. Before initiating this type of conversation it can be helpful to check the extent of a person’s understanding of their illness and whether or not they want to talk about the future.

The importance of having conversations and making plans for end of life has been highlighted as being relevant for people in the early stages of life limiting illness as well as for those nearing the end of life. There is evidence that people who have Advance or Anticipatory Care Plans in place are more likely to receive the care that they want and treatment can be less invasive. ACP is a process rather than a one-off conversation. It is acknowledged that ACP discussions should take place in appropriate settings with sufficient time to enable to people to consider and weigh up different options. ACP should also be developed in line with peoples’ personal values and goals (Sinuff Tasnim, et al.(2015) “Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators.” Journal of pain and symptom management 49.6 2015): 1070-1080).

Perhaps we should think about planning ahead whether or not we have advanced illness or long term conditions??

Training

To get the most out of the resource we run half day advanced training courses which will include the Thinking Ahead Resource. This course will be relevant to you if you:

  •  have attended a Talking Mats foundation training and are experienced in using Talking Mats with adults
  • want to extend your use of Talking Mats and consider its role and application to advance care planning
  • want to discuss sensitive topics around end of life care

 

Please contact us at 01786 479511 if you are interested in future dates.

Talking Mats in German

german app

We are delighted that ‘Talking Mats in German’ is now available in the Digital version and includes the latest technical and symbol upgrades. These upgrades are also now included in the English version.

Please click on this link to find out about all the upgrades.

We are very grateful to Prof Norina Lauer for sending us this blog which explains how ‘Talking Mats in German’ has been developed.

In 2016 Prof. Dr. Norina Lauer, a German professor for speech language therapy contacted Joan Murphy from Talking Mats because she was initially interested in the digital version for goal setting with people with aphasia. We found out that it would be interesting to have a German version of the app. So we started a project for translating Talking Mats into German. Prof. Dr. Norina Lauer managed the translation process. The project was financially supported by a German health insurance “BKK Dachverband” in cooperation with the German aphasia self-help organization “Bundesverband für die Rehabilitation der Aphasiker” (www.aphasiker.de). The translations were performed in a special scientific procedure to make sure that they match the English terms.

german app in action

What did we do?

Norina Lauer and her colleague Holger Grötzbach independently translated the English terms into German. Subsequently these translations were compared and the differing terms were discussed until a consensus was reached. The agreed translations were given to a professional translator who only got the German words and the corresponding pictures. She re-translated the terms into English and these re-translations were checked by Talking Mats if they were in accordance with the original English terms. For those terms that did not match, the process started again until all terms matched the original English terms (figure 1 shows the translation process). This process was performed for all topics of the app. So we have the complete Talking Mats app in German now.

Norina figure

Figure 1

So what’s next?

Norina Lauer completed the foundation training and the accredited training in 2017. In October 2017 she performed her first foundation training for 6 of her SLT students. One of these students will do her bachelor thesis about the German app version in 2018. Under accompanying consultation of Norina Lauer the student will perform two workshops for people with aphasia. In these workshops they will practice doing Talking Mats and afterwards evaluate the app concerning its content and practical use. For the evaluation we are planning a short questionnaire and a focus group.

It has been a delight to work with Norina and we look forward to hearing the results of her student’s project.

If you already have the Digital Talking Mats make sure you upgrade to get all the new features.  The German version with the upgraded is now available from the App store, Google Play (Free and Lite versions) or purchase the full version from our website .

Advance Care Planning: Lorraine’s story

affairs_TOPIC

We are working with our colleagues at Strathcarron Hospice to develop a resource for Advance Care Planning which should be available early in 2018.

This poster illustrates how we are developing the resource:
2017 TM and Advance Care Planning

During the pilot phase our colleague Sally Boa (Head of Palliative Care Education, Research and Practice Development at Strathcarron Hospice) received the following moving story from Lorraine. We are extremely grateful to Lorraine for allowing us to publish it.

 “My name is Lorraine and I am a carer for my husband who has cancer and is a palliative care patient.

I have been involved as a volunteer with Susan at Strathcarron Hospice since February this year. This was a group formed from the community put together by volunteers to get their help and opinions of thinking ahead and to understand what a loved one wants for their future and awareness of information and services available to people caring for someone with a long term illness/palliative care, but most importantly how best to get a loved one to open up and talk about their feelings and what they want for their future and arrangements.

Personally it has been for me interesting, draining and emotional at times, but this journey I have been on has made me think and realise that these are very important issues that need to be talked about with my husband and family.

I had tried to get Gordon to talk about these things, but it was difficult to bring the subject up. He just changed the subject. I tried leaving booklets lying on the table when I was out, but if he did look at them he never mentioned it.

Thinking about death is very emotional and stressful subject to talk to someone you love about. I know how I felt with these thoughts going round in my head and it was not nice. As for our two sons they seem to have accepted the situation now, although it was difficult. We have never lied to them and tried to explain what’s going on, but finding the right words isn’t easy. Moving to acceptance instead of denial is very, very hard on everyone.

I also have been involved with trying out Communication Cards (Talking Mats) which had been designed to help people who have difficulties in communicating. I went to the Hospice where I was asked some questions that I answered using the cards. I answered using the cards under the guidance of “feelings” I was surprised to find I had more positive replies than any of the others, I feel the cards would help people show their feeling better. I was asked if Gordon would be interested in doing the same. Sally emailed me a photo of my cards/answers, and I showed it to Gordon and I took the chance and asked him and he said yes. Sally came to the house and they did the task using the cards with no input from me {I kept very quiet ha ha}. The benefit Gordon got from this was really good. He was quite surprised to find he had placed more cards on the positive side as well his thoughts and feelings and he felt good about actually seeing that in front of him.

When Sally left I thought to myself this is my chance to approach the subject but again deep down I was scared as the last thing I wanted was to upset him.

I approached the subject with Gordon…. how about we continue chatting about what he wanted for his future and arrangements etc. I put it to him he knew what I was involved with for months with Susan and Mandy and that he was always interested to hear what we were doing but the truth was I still didn’t know what he wanted, I only knew he wanted a church service and burial. We sat at the table and talked about everything, I took notes what Gordon was telling me he wanted about everything.

I am an awful one for my Diary/ Journals I recorded everything we discussed finances, lawyer, wills, his wishes, Hymns he wanted, service at the graveside,what was to be given to family etc. in fact everything we could think of is now recorded and in one place. Both our boys will be told and where to find it. Jokingly to make it a bit light hearted I said I could go first you know, so we both took the opportunity to write and record all my wishes which is listed in the same journal.

Afterwards I really don’t know how to explain it but I felt a tonne weight off my shoulders, I now know everything I need to know.

More important for me I’ll never need to discuss it again with Gordon the book will be locked away safe and we can get on with our lives.

Please try and find the right time to talk, it’s very important and it will stop a lot of stress and emotional turmoil at what would be a very sad time for all.”