The Living Well with Dementia Course

A Workbook for Facilitators

Richard Cheston, Ann Marshall

• Publisher: Routledge
• Year: 2019
• ISBN:
  9781351008983
• Edition: 1
• Topic: Medizin
• Subtopic: Geriatrie

The Living Well with Dementia Course: A Workbook for Facilitators will be an indispensable guide to providing support to people after they have received a dementia diagnosis. The workbook provides facilitators with a realistic but positive approach to helping people with dementia understand and adjust to their condition, helping them to live as well as possible.

This workbook outlines the Living Well with Dementia course, a post-diagnostic course for people who have recently received a diagnosis of dementia. Its session-by-session structure, along with e-resources including handouts for course participants, will help facilitators provide a realistic but positive approach to support after a diagnosis.

Aimed at facilitators, and drawing on the authors' many years of clinical and research experience, The Living Well with Dementia Course workbook will be of great assistance to healthcare professionals and support workers in many different settings, including specialist NHS dementia services, primary care services and the voluntary and community sector.

1
Introduction to the Living Well with Dementia course

There are around 850,000 people who are living with dementia in the UK. All of the national governments within the UK now place great emphasis on making sure that people with dementia are diagnosed at as early a point as possible. Increasingly, the National Health Service (NHS) and other services also make sure that information and support are available after a diagnosis. This aim of this support is to provide the opportunity for people to adjust to the illness better and to develop new coping skills.

In the UK, there are many different forms of support currently available – sometimes a confusingly large number of therapies, supports and advisors, including Animal-Assisted Therapy, Assistive Technology, Cognitive Behavioural Therapy, Cognitive Rehabilitation, Cognitive Stimulation Therapy, Creative Arts Therapies, Dementia Advisors and Navigators, Alzheimer Cafés, Singing for the Brain, Life Review Therapy, Life Story Work, Music Therapy and Reminiscence Therapy, to name just a few. However, while all of these different sources of support and therapy can be extremely useful, all too often the emotional impact of dementia is not addressed. In particular, the process by which people adjust to their diagnosis is all too often ignored. It is precisely this need that the Living Well with Dementia course focuses on – providing the support that many people who have recently been diagnosed with dementia need to help them to adjust to, accept and come to terms with their diagnosis.

The importance of emotional support

We believe that it is often the emotions that surround dementia that make it difficult for people to talk about it. People may be worried about the future, angry and frustrated at their memory loss or grieving for what is now beyond them. Often, it is difficult for their family and friends, who are themselves trying to adjust to the illness, to know how to provide the emotional support that is needed.

Providing emotional support can help people to talk more openly about their illness – and thus to adjust to their condition. However, emotional support needs to be provided at a pace that is appropriate for the person, either following diagnosis or when the person feels ready. Ideally, support should also be available to the person’s family or other people closely involved – both to help them to adjust and to promote discussion between them as a couple or as a family.

It is important for people who have a diagnosis of dementia to have the opportunity to understand more about their illness if they wish to do so. However, this can be challenging: dementia is a frightening illness. For many people, a safe, supportive course with an experienced facilitator can enable people to meet others who are going through the same things as they are and take away some of the fear about dementia. The groups also provide a chance for people to learn from and to help each other.

Why is dementia difficult to discuss?

The vast majority of people who go to a memory clinic or consult their GP about their memory difficulties want to be told what is wrong with them – they want to be given their diagnosis, even if this is upsetting. However, once they leave the memory clinic, then often it can be difficult for them to find a way to continue to think and to talk about their diagnosis. There are very understandable reasons for this:

• Receiving a diagnosis is frightening. Dementia is a progressive illness that cannot be cured and which involves the person gradually losing many of the abilities that define him or her and becoming increasingly dependent on others. It’s no wonder that people are frightened about what lies ahead. However, people often have misconceptions – for instance, thinking that they will rapidly deteriorate, or that they won’t be able to have any quality of life.
• Dementia and stigma. We know that there is often a stigma about dementia. This is one of the most important barriers to talking about memory problems and something that often stops people receiving a diagnosis and the support that comes with this. One of the most common reactions to stigma is that people prefer not to talk about their problems. One Living Well with Dementia course participant said, “You don’t like to talk about it. I kept it to myself before I said anything, and wouldn’t tell anyone. I thought that they’d think I was mad”.
  There is evidence that people from some black, Asian and minority ethnic (BAME) communities may be especially vulnerable to feelings of shame following a diagnosis of dementia (1, 2). Within many BAME communities, the changes that memory services view as “symptoms” of dementia either seem to be just a feature of growing old or are seen as highly stigmatised signs of mental illness. In addition, sometimes families feel an especially intense pressure to provide care themselves without relying on support from the outside world. Consequently, the feelings of shame and embarrassment that are felt by almost everyone who is living with dementia tend to be intensified for many people from some BAME communities.
• Other people might also avoid talking about dementia with the person who has been diagnosed, not knowing how to approach it. As one man told us in a group:
  “People can’t handle it so they don’t want to know, so they try to avoid it”.
• People may feel embarrassed. People often feel embarrassed about having a memory problem or other types of cognitive difficulties and tend to avoid situations where the problems might be exposed. This can lead to them feeling lonely and isolated, which can make their problems worse.

Due to all of these very understandable feelings, a common response of people who have received the diagnosis is to begin to withdraw into themselves. It is as if they have chosen, in some way, to “shut off” their awareness about their dementia – for instance, by withdrawing from activities and being reluctant to talk about their dementia. For some people, this shutting off of awareness may well be the best way to cope. However, this is not always the case – often it is important to provide people who have been recently diagnosed with opportunities to understand their illness and a space to think through its implications. We believe that providing these opportunities often enables people to cope better. This is exactly what we think this course can provide.

How does the Living Well with Dementia course help?

The approach in this course is that one of the best ways to help people to live well with dementia is to help them to find a way to talk about their experiences and difficulties. Often, people either avoid talking about their dementia or refer to it indirectly – as “it” or “that thing I’ve got”. It can be a big step for people to use terms such as “dementia” or “Alzheimer’s disease”, because, for many people, this makes it more immediate and present in their lives. An important psychological task, then, is for people to not only name their illness, but also do so without being emotionally overwhelmed by its implications.

At the same time, it is important for those providing this support to realise that not everybody wants to talk about their dementia or is able to do this. This inability to talk openly about dementia may be due to many different factors – including the neurological impact of the illness itself. Sometimes, it may be because the person has always struggled to accept change. For some people, other ways of coping will be preferable, and the Living Well with Dementia course will not be for them.

In order to help people with the emotional elements of adjusting, the approach we have taken in this workbook is to be gentle and supportive and to find a way to help group members feel comfortable.

So use this workbook in the way that works best for your course. You will need to go at the pace that’s right for the group members and which creates a space where they feel comfortable discussing difficult and emotional issues. However you use the workbook, there are some basic principles that you should follow to maximise the opportunity for people to “live well with their dementia”.

Measuring effectiveness – what differences does coming to a Living Well with Dementia course make?

In the time that we have been using and developing the Living Well with Dementia course, we have made a conscious effort to continue a research programme to learn more about its clinical impact. This includes asking for feedback from all of the NHS services that have been using it. This feedback has been integrated into successive versions of the workbook and has helped us to continue to develop the model.

This research programme has combined quantitative research (such as comparing levels of self-esteem and quality of life before and after participants complete the course) and qualitative research (for instance, interviewing participants, their families and group leaders to find out their opinions). Sometimes this research has been specifically funded through a grant, and at other times group facilitators have asked people attending the course to complete an evaluation form at the end. In considering this evidence, it is important to bear two things in mind: first, we have not yet been able to carry out the detailed, extensive research that would conclusively demonstrate, one way or another, whether the Living Well with Dementia course is effective; second, while we believe that the evidence that we have so far collected does point to some people benefitting from the Living Well with Dementia course, at the same time, there are other people who clearly don’t benefit. This may be because they attend all the way through the course but just don’t feel that the course has helped them, or because they come to a few sessions and then decide it’s not for them.

Participants feel better about themselves

Perhaps the most frequent comment that people who have come to a course make at the end is that they feel better and more confident about themselves. One participant on a Northampton course, for instance, said that it had given them “the confidence to deal with the initial problems that the dementia is causing”. As psychologists, we describe this as people having a higher level of self-esteem – something that dementia generally erodes. We know that good self-esteem is important for many reasons, including helping people to deal with change. It was, therefore, one of the main things we looked at in a pilot study of the Living Well with Dementia course (3). In this, we compared 30 people who were randomly allocated to attend a course and 30 people who were allocated to waiting to attend a course (a control group). This study was a pilot study – it wasn’t intended to find definitive results, but rather help us to be confident of the methodology that we could use in a larger trial, including the process of randomisation, training facilitators, and so on. The results of this pilot study were mixed: attending the course did improve self-esteem, but once we took into account differences between the two groups at the start of the course, then this improvement wasn’t statistically significant, probably because our sample was quite small.

However, the pilot study is not the only research into the course that has been carried out. Clinicians in two NHS sites (led by Alexis Berry in Northampton and Tracy Lintern in Sussex) have been running Living Well with Dementia courses for several years and have been collecting data from course participants as they have done so. These studies don’t have the methodological advantages of including a control group, but they still provide important evidence about whether people change as a result of attending a course. Both of these studies have shown significant improvements in average levels of self-esteem as a result of attending the course: in Northamptonshire, this was the case for 128 participants and in Sussex, for 38 participants.

Participants often have a better quality of life

As people feel better about themselves, they also develop the confidence to face challenges in their life. One Northampton participant said, “The group gave me time to think about how I would manage frustrations about forgetting things. I have learnt not to get narky with myself about it. I read more now and get books from the library”. The same picture comes from Sussex, where one participant reported that “I feel more confident and want to do more e.g. outings, simple chores”, while another said, “I am now doing more and reading more, going out instead of sitting at home watching TV”.

Carers, too, often say that their partner has developed the confidence to do more things. One woman recognised this in her husband, who she said had “gained more awareness of a shared experience with others which reduced his feelings of isolation and indifference”. A carer in Northampton reported a similar experience: “most importantly the group halted a decline into ‘closing down’ life, so life is opening up. We are looking at what is possible as opposed to what has been lost”.

One way of measuring whether these anecdotal reports of participants doing more as a consequence of attending a course are isolated incidents or reflect a more general pattern of change is to assess whether the course improves participants’ quality of life. In our pilot study, we found that average levels of quality of life improved for participants in the Living Well with Dementia course compared with those in the control group, but once again not to an extent to be statistically significant. However, the results from the Living Well with Dementia course in Northampton did show a significant improvement in quality of life for participants as well as a reduction in the extent to which carers felt stressed.

Participants are more able to accept their dementia

One of our main aims in developing the Living Well with Dementia course was to create a safe way for participants to discuss their dementia with other people who had similar experiences and who could, therefore, understand how they felt. For many people, this is exactly what has happened. In sharing their experiences, participants came to realise that they are not the only ones experiencing these symptoms. As a Sussex participant put it, “I didn’t realise there were others in the same situation as me. I felt quite alone before the group”. For many people, this apparently simple insight is an enormously important step. For instance, one man described how his wife “now realises what has happened to her and is now taking this in her stride. She has enjoyed knowing that she will be amongst people with the same problems she has and being able to share and talk about her issues”.

In order for these changes in thinking about dementia to happen, it is important for participants to be able to talk openly about their lives with dementia. A woman who came to one of the courses in our pilot study told us at the end, “I’m not ashamed to say that I’ve got it [dementia] whereas I think I might have been if it hadn’t been, you know, for everybody else being so honest”. Her husband agreed with her, saying, “Probably the most important thing, is it encouraged you in front of other people to stand up and say ‘I have dementia’…. I think up until th...