Case Study - A Relationship-centred Approach to Living Well With Dementia

8/2/2019 Case Study - A Relationship-centred Approach to Living Well With Dementia

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Alzheimers Society training course A relationship-centredapproach to living well with dementia

Case study East Midlands Carers Project

Background

In April 2010 to July 2010 Alzheimers Society conducted a pilot of the new training course Arelationship-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 atraining 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 Asystem 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 widerange of community dementia services including speech and language therapy, occupational therapy,care management, domiciliary care, Alzheimers Society support staff, mental health and learningdisability 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 ofcreating a system on their side

To adopt strategies to equip carers and people with dementia to live together well and better with theillness.

Feedback from participants

On pre-course study

Open dementia programme Ive been looking for a good quality package like this for a long time. Itwill 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 myworkplace in the future


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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 anddiscuss 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 takeforward 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 learningAll learners were asked to undertake a day of self directed study prior to their attendance on the faceto face study day. This consisted ofselected modules from the SCIE Open dementia programme e-learning resource alongside some recent key articles and a reflective exercise on the content and impactof staffs current encounters with people with dementia and their families.

Study dayThe 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 theprofessional 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 awedge 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 theproblem; identify potential barriers to these general ideas; and formulate specific first steps to begin toaddress these barriers. They were all asked to think specifically about their own workplace. A summary ofsome key ideas and plans from each of these subject areas follows below.


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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. Therewas no clear idea of whose responsibility it was to flag up, assess and respond to the change in therelationship 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 relationshipas well as looking at the current dynamic in the relationship within a family, to reassure families that thisis 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 onto 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 asystem 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, yetcurrently least well-equipped. Most groups identified a large training and education need to equip frontline care workers with the skills to observe, acknowledge and respond to the relationship dynamic in thehomes 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 awkwardat 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 keyissues, was the recognition of the need for a controlled release of timely, appropriate information rightthe way through the relationship with services, so that families can identify a resource to channelenquiries or stronger feelings. This process would represent an about turn from what was reported asoverwhelming 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 itmight be. Learners also spoke about the dangers of cases being opened and closed quickly and then re-allocated, building in a lack of continuity and leading to reactionary services with waiting lists subject toprioritisation. The groups then looked at the practical first steps needed to advocate for a more proactiveapproach within services existing resources such as Alzheimers Society and Age UK to help with thiswere also identified.

National dementia strategy objectives: 1, 2, 3, 4, 6, 7, 13, 14


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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 pathwaysalong 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 keysupport, especially when moving in/out of very short transitory services such as a brief hospital stay orrespite. 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 silothinking of other services not adopting this tool.

Suggested steps to take included driving a local awareness campaign on such a document, promotingthe benefits of having a client held record. Frequently the Alzheimers Society This is me document wasseen as an ideal tool to adapt. In the groups there were a lot of examples of good This is me contentand 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 owninformation on the potential of the This is me document, was identified. At virtually every session thiswas 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 prejudicedagainst 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 andhave this, or comments of that ilk, considered as gross misconduct akin to the utterances of racistcomments 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 earlierin the day and promoted a clean slate culture. They sought to allow ownership of the decision makingprocess 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 realmutual 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 ofinterpreting so called challenging behaviours as methods of communication. One group rightly identifiedthe 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 facewhatever 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 ownperception

National dementia strategy objectives: 2, 3, 4, 5, 7, 11, 13, 14

Documents

Case Study - A Relationship-centred Approach to Living Well With Dementia