Alzheimers Society training course A relationship-centred approach to living well with dementia Case study East Midlands Carers

s Project
Background
In April 2010 to July 2010 Alzheimers Society conducted a pilot of the new training course A relationship-centred approach to living well with dementia across the five counties of the East Midlands. The programme was devised in response to East Midlands PCT approaching us in order to commission a training course, using funds from the Carers Strategy. The course was to equip front line workers to better support families living with the presence of a dementia in their midst. We entitled the course A system on their side a key goal written in the Strategy. The course was attended by 520 front line care staff over 30 sessions. Participants were from a wide range of community dementia services including speech and language therapy, occupational therapy, care management, domiciliary care, Alzheimers Society support staff, mental health and learning disability nursing, community care officers and other statutory and third sector bodies. The aim of the course was to help staff: Enhance the quality and type of support they currently offer to carers To identify unattended antagonisms within relationships and to be confident and competent to respond to these. Understand both sides of the care giving relationship and the broader impact of the presence of a dementia within a family Recognise their position in a community-wide network of services and to understand the importance of creating a system on their side To adopt strategies to equip carers and people with dementia to live together well and better with the illness.

Feedback from participants

On pre-course study Open dementia programme Ive been looking for a good quality package like this for a long time. It will be an excellent resource to share with my colleagues Great way of learning. Very informative Interesting and useful to read articles. Gave insight into course and an improved way of practice On face to face study This was a very rewarding day Really enjoyed it gave food for thought and reminded me about including service user Very enjoyable and interesting course. I will be able to use a lot of this information and knowledge in my workplace in the future

Excellent presentation, presenter very knowledgeable, approachable able to listen to others issues Excellent as a community physio I have found it extremely useful and informative I have walked away with a much better insight a very worthwhile study day A lot of work and thought has been given to the content of this course. It is always good to meet and discuss with other people about their input to dementia services. An intense day Makes you think! Really good balance of theory, case studies and discussion valuable information gained A great learning opportunity, thank you. Made me take a look at the service I currently provide and how this could be better delivered The whole day was excellenteverything was of some use in my role. I have an action plan to take forward and now feel I can address the concerns that I started the day with I think this training should be mandatory for health and social care staff. Action planning excellent ideas Commissioners need to attend to develop services and support

Structure
Self guided learning All learners were asked to undertake a day of self directed study prior to their attendance on the face to face study day. This consisted of selected modules from the SCIE Open dementia programme elearning resource alongside some recent key articles and a reflective exercise on the content and impact of staffs current encounters with people with dementia and their families. Study day The morning session introduced learners to the idea of a relationship-centred approach to care to gain a clearer picture of both sides of the care giving relationship, as well as the impact of the presence of the professional worker as a third party in this relationship. The afternoon session was dedicated to action planning on one of four possible topics. 1. How can we respond to unattended antagonisms within the care giving relationship? (Domestic strife; stress, burden and blame; a power imbalance within the relationship; the dementia driving a wedge between couples). 2. How can we broach important awkward subjects such as dementia itself, death, sex or the future? 3. How can we ensure smoother transitions in and out of dementia services (respite/long term care/hospitals)? 4. How can we put an end to the prejudicial label of The nightmare family or the family from hell? Each group was given an action plan template to help them focus on general ideas to address the problem; identify potential barriers to these general ideas; and formulate specific first steps to begin to address these barriers. They were all asked to think specifically about their own workplace. A summary of some key ideas and plans from each of these subject areas follows below.

Action Plans Unattended antagonisms

Everyone recognised the presence and danger of unattended antagonisms within relationships. There was also a frank admission that there is little or no formal set up within teams to respond to these. There was no clear idea of whose responsibility it was to flag up, assess and respond to the change in the relationship dynamic within a family with the presence of a dementia. Specific action plans recognised a need in the assessment period to gauge the pre-morbid relationship as well as looking at the current dynamic in the relationship within a family, to reassure families that this is something that can be addressed, however difficult an issue. One particular group recognised the benefits of informal chit chat as a tool. Questions they then went on to address were: How can chit chat be integrated into the assessment workers tool box? What is more accessible and understandable - assessment or chit chat? Which of these would more be a system on their side? An initial step would be to launch a local message that its time for a simpler approach to language a system on their side would be one talking in terms of chats not assessment. It was acknowledged that front line care workers by virtue of their frequent contact are best placed, yet currently least well-equipped. Most groups identified a large training and education need to equip front line care workers with the skills to observe, acknowledge and respond to the relationship dynamic in the homes in which they work. National Dementia strategy objectives: 1, 2, 3, 4, 6, 7, 13, 14, 15.

Awkward subjects
There was a wide response to this as is rightly to be expected any topic could be perceived as awkward at any time. The following areas were frequently covered Death, Sex and the Future. It was interesting that, alongside the production of simple information leaflets and training on some key issues, was the recognition of the need for a controlled release of timely, appropriate information right the way through the relationship with services, so that families can identify a resource to channel enquiries or stronger feelings. This process would represent an about turn from what was reported as overwhelming overload of information on families during very sensitive periods. Valid questions were raised; including who is best equipped to drip feed this support; and whose role it might be. Learners also spoke about the dangers of cases being opened and closed quickly and then reallocated, building in a lack of continuity and leading to reactionary services with waiting lists subject to prioritisation. The groups then looked at the practical first steps needed to advocate for a more proactive approach within services existing resources such as Alzheimers Society and Age UK to help with this were also identified. National dementia strategy objectives: 1, 2, 3, 4, 6, 7, 13, 14

Transitions
Discussion were held around a whole raft of issues that cut across all the areas of action planning: education, getting families on board, explaining and clarifying roles, and creating local care pathways along the lines of work they were already aware of in other areas. Nearly every group looked at the problems in transition caused by lack of information and consistent key support, especially when moving in/out of very short transitory services such as a brief hospital stay or respite. A client owned record or passport was seen as a way forward. Identified barriers were to this were a negative or reluctant local attitude, lack of take up, and silo thinking of other services not adopting this tool. Suggested steps to take included driving a local awareness campaign on such a document, promoting the benefits of having a client held record. Frequently the Alzheimers Society This is me document was seen as an ideal tool to adapt. In the groups there were a lot of examples of good This is me content and an awareness of a substantial local potential to promote and adapt this to ensure it covers specific information that can really help all parties. A need to pilot and use resources such as Alzheimers Society to support it and to publish its own information on the potential of the This is me document, was identified. At virtually every session this was seen as an eminently do-able plan National dementia strategy objectives: 1, 2, 3, 4, 5, 6, 7, 8, 9, 11, 13, 14

The family from hell

This topic encouraged learners to think about how care is prejudiced and how staff are prejudiced against certain families, in some cases families they have never even met. One group opened up with a statement that we should eradicate any talk of the family from hell and have this, or comments of that ilk, considered as gross misconduct akin to the utterances of racist comments for example. Apart from the big stick the group focussed on what generally constituted a problem family aggression, concern, threatening, demanding, questioning. They drew from exercises we had done earlier in the day and promoted a clean slate culture. They sought to allow ownership of the decision making process around a persons care to lie more with the family than has historically been the case. Broad aims covered building bridges and strong relationships with families gaining and promoting real mutual trust and understanding. Barriers perceived were the lack of skills of potential bridge builders, such as negotiation, body language, assertiveness, understanding of the perspectives of others and especially an understanding of interpreting so called challenging behaviours as methods of communication. One group rightly identified the need to move from problem family to concerned family. There was a general consensus that the plans to equip staff with the confidence and competence to face whatever range of responses might come from certain families were practical and easy to implement. I found that looking at the challenging family was excellent as it encouraged us to question our own perception National dementia strategy objectives: 2, 3, 4, 5, 7, 11, 13, 14