I work in the Hull memory clinic where all of the clients seen are experiencing some degree of memory loss; I felt it appropriate therefore that the focus of the following piece of work should be exploring the use of Cognitive Behavioural Therapy (CBT) and its relevance to working with people experiencing dementia.
Dementia is a term for a range of progressive illnesses including Alzheimer’s, vascular dementia, fronto – temporal dementia and dementia with Lewy bodies (Alzheimer’s Society 2008.) The report Dementia UK by the Alzheimer’s society states that numbers of people with dementia in the UK are forecast to increase to 940,110 by 2021 and 1,735,087 by 2051, an increase of 38% over the next 15 years and 154% over the next 45 years.(Alzheimer’s Society 2008.)The report estimated that there are now 683,597 people with dementia in the UK. The prevalence of dementia increases rapidly with age, a report by age concern stated that 5 percent of people aged 65 and over have a dementia, rising to 20 percent of people aged 80 and over and 33 percent of people aged 95 and over. (Age Concern 2007)
Anxiety is common in dementia, is associated with decreased independence and has been found to be a significant factor in determining prognosis, length of illness and response time to medication. (Sadavy et al, 1997) However it would appear that little is known about its treatment in dementia. Jones in 1995 stated that patients in the early stages of dementia managed the anxiety created by their memory problems by using co-morbid coping mechanisms. He felt that the patients were eventually unable to cope using their internal resources and their decline in functioning led to increased anxiety in turn being expressed as a catastrophic reaction, as the only means left for them to express the anxiety and emotions they felt. During the early stages of dementia, other changes may occur such as lability in mood with loss of impulse control and judgement in social situations. Laidlaw et al (1995) felt that depression could be observed throughout dementia but could present with different symptoms at different stages. They felt that in the early stages a client can present with depression and anxiety as well as frustration and agitation associated with loss of function and a high level of awareness that changes are occurring.
With the evidence available showing the impact of anxiety and depression on the patient with dementia, it would seem obvious then, that helping the patient and carer develop coping skills early in the disease’s progression could help reduce future potential challenging behaviour.
In 1991 Hidegard Peplau described how the nurse/client exploration of the client’s feelings and concerns led to personal growth for them both. This was explored further, also in 1991, by Williams et al when they discussed how creating a therapeutic relationship for clients with a dementia involved facilitating and encouraging discussions regarding their concerns and emotions that naturally went along side their experience of the illness. They felt that this would enable a client to preserve their sense of self whilst encouraging self reflection and personal growth.
We can see how extensive research has shown the potential benefits of the therapeutic relationship, and how this can aid with positive outcomes when working with CBT. For example Orlinsky et al (1994) put forward how an effective client-therapist relationship was an important factor for successful treatment. And in 2000 Cacioppo et al went on to further explore how the therapeutic relationship had the power to affect a variety of psychological processes therefore directly influencing outcomes.
However, not every piece of literature supports the benefits of the therapeutic relationship as wholeheartedly being responsible for positive outcomes. It was argued by Feely et al in 1999 that it was the client’s perception of their improvement in symptoms that lead to them perceiving a greater empathy in the therapist and better therapeutic relationship rather than the relationship itself affecting the symptoms. Roth and Fonagy in 2005 also felt that the relationship was in itself not responsible, stating that although the therapeutic relationship was necessary to the treatment, it was not the main factor affecting the outcome. They felt that it could be the participation of the client in the treatment which most significantly affected the outcome.
The overall bias in literature points towards the benefits of the therapeutic relationship, in 2004 Padesky wrote that the key to a successful treatment outcome is having a good therapeutic alliance. She felt that there were some key elements to developing this alliance, primarily through developing a positive bond with the client.
The benefits of a good relationship can clearly be seen, how then is this achieved? Does it mean that this naturally happens in every therapist-client relationship? It sounds simple, however, Beck et al (1979) discussed how the relationship between therapist client and techniques was a very complex one requiring the therapist to have characteristics such as warmth, empathy genuineness and unconditional regard for the client. Padesky (2004) had a similar view when she highlighted that to develop a good relationship a therapist should show empathic listening, accurate reflections and show warmth and caring. She went on to state that the agreement between therapist and the client on the tasks and goals of therapy was also an essential component of a good therapeutic alliance. Within the relationship a client has their own expectations of the therapist, as discussed by Wright and Davis (1994) who found that client’s expectations which helped contribute to a positive relationship included being respectful, being competent and being flexible with the client, not making assumptions about the client fitting a theory.
In the book “The therapeutic relationship in the cognitive behavioural psychotherapies” By Gilbert and Leahy (2007) the main components to a therapeutic relationship were summarised as “the effective bond and partnership, the cognitive consensus on goals and tasks and the relationship history of the client”
The therapeutic relationship between nurse and client could be viewed as off to a bad start when working with people with a dementia in a memory clinic, as one of the initial stages of the therapeutic process involves informing the client and carer of their diagnosis of a dementia, possibly providing the client with the information they had dreaded hearing. H. Husband (2009) discussed how dementia was seen as one of the disorders people most dreaded. She went on to explain that dementia carries a social stigma and is associated with increasing dependency on others. People also see dementia as a disease within which they lose their sense of self and cease to become autonomous. With this as a starting point for a relationship, how therapeutic can we be?
There is now emerging information on the views of people with dementia receiving their diagnosis. Fearnley et al (1997) discussed the common practice of non disclosure in the UK and the possibility that this can be detrimental to the person with dementia and their families. However, since then it has been found that partnerships and relationships could be enhanced by the involvement in the diagnostic process. (Myrra Vernooij et al (2006))
In 1991 Christine felt that the formation of a consistent supportive relationship with a nurse helped to provide the client with dementia the opportunity to express any concerns and hopefully avoid isolation. This was later confirmed by Husband (1999) who felt that in establishing openness and trust early in the relationship, it would enable the therapist to facilitate a good future relationship with the client following diagnosis.
Although developing a therapeutic relationship is seen as the first phase of the therapy process, within engagement, it also has a significant impact on the following stages, contributing to the overall success of therapy.
The initial assessment process can serve as an ideal starting point for developing the therapeutic relationship, with the early phases being about assessment and relationship building. Hawton et al in 1998 stated that the assessment process and subsequent development of the formulation could be a very powerful therapeutic process in itself. In order to develop the relationship and engage the client from the outset, Westbrook et al claimed that it was important that the therapist model curiosity and hopefulness which would encourage a “possibility focus in the client”. This focus can then go on to help the client change their unhelpful thinking, emotions and behaviours. D Jolly et al 2006 stated that a detailed and structured assessment makes the process of identifying a person’s difficulties possible. That assessment also meant that professionals could better explore ways of managing difficulties with the client and their carer to plan strategies to cope with their deficits.
The assessment process is generally carried out during the first few sessions, however, like engagement; it is a continual process, which happens throughout the treatment. Hawton et al (1998) in their book CBT for psychiatric problems, discusses this in some detail, taking the view that the assessment was only a preliminary step which needed to be added to throughout the process with more detailed information.
The assessment process in CBT can be seen to have very specific aims, according to Wells (1997) these are:-
Establish a person’s problems in clear and measurable terms,
Access the factors that serve to maintain both the problem and the client’s vulnerability,
Determine the impact on the client’s life,
Construct a developing case formulation,
Establish a baseline against which to evaluate the progress and impact of intervention.
The Hull memory clinic follows a rigid assessment process which aims to look at the person with dementia as a package, assessing the carer and client separately as well as jointly. This encompasses Well’s aims of CBT assessment through client/carer history, assessments of burden, specific problems and measurable testing. The clinic also operates a multi-disciplinary formulation including consultant psychiatrists, psychologists, nurses and if appropriate o.t’s and pharmacist’s. This helps with the initial stage of case formulation and is regularly reviewed with all involved.
Laidlaw et al (2004) felt that a comprehensive assessment such as that offered in memory clinics, could be very helpful when developing a treatment plan for patients with a dementia and co-existing mood disorder. Their guidelines for thorough assessment included gathering information relevant too several topics:
General mental status,
Comprehensive assessment of cognitive abilities,
Psychometric evaluation of the level and type of emotional distress,
Assessment of the pattern and adequacy of coping,
Social, family and work history,
Current work and social environment,
General health and physical functioning,
Adequacy of social, emotional and instrumental support systems.
They felt that in order to gather all the relevant information it would be necessary to consult several sources.
When working with older people, and particularly those experiencing memory difficulties, the presentation of their problems is rarely presented in clear and measurable terms! Generally they are experiencing many difficulties at once and during the initial assessment, carer’s in particular can be over-burdened and highly stressed, unable to clearly define the most important or relevant difficulty. When we are faced with many difficulties at once, either as a client or therapist, it can leave us feeling confused and over whelmed. Wright et al (2002)felt that in order to tackle this effectively it is necessary to prioritise and focus on one area at a time. The 5 area’s model can provide a clear structure within which the multiple problems experienced by a client or carer can be summarised, enabling detailed examination of each.
Williams and Garland (2002)felt that working within the model helps practitioners identify clear target area’s for intervention and helps the client develop an understanding of the effects of their problem on other areas of their lives. Thus enabling clients to view their problems more objectively.
The five areas include:-
Life situations, relationships and practical problems,
Altered thinking,
Altered emotions,
Altered physical feelings/symptoms,
Altered behaviour or activity levels.
The five area’s approach can help both the client and the practitioner identify relevant clinical problems to them both. It can also help to identify the appropriate professional for further involvement such as o.t or psychology. The approach can also help the client and therapist identify clear goals for therapy.
Padesky (2003) stated that goals could help a therapist identify what a client wants to change, guide plans for change and provide guideposts to track progress. She also felt that breaking down general goals into more specific ones helped to simplify the change process; she felt that these goals should then be prioritised to enable the client to get the most from therapy.
Although the five area’s model looks simple, it is not always so easy for a client to identify their thinking processes. During the on-going assessment and formulation with a client, their “automatic” thoughts are easily accessed, these thoughts are those which are specific to a given situation such “I can’t cope” or “what’s the point”. They are common to all of us and are usually quite brief, fleeting thoughts. Behind these automatic thoughts is a level of underlying assumptions or “rules for living”. These are thoughts such as “I must not” or “if…..then….” which guide our actions and thoughts. These again can be fairly easy to access as we are generally aware of them. On a much deeper level of our cognition, and hardest to access, are our core beliefs. As the hardest to access they are also the most difficult to challenge.
These disordered thoughts can form the basis of our interventions; many cognitive therapists assert that the core of the CBT model is that cognitive change is central to treating psychological distress. ( Beck, 1970; Derubeis et al, 2001; Clarke, D. 1995). They felt that changing maladaptive thinking was the process by which CBT was effective.
The middle phase of treatment can be seen as including the formulation and treatment phase.
Case formulation can be seen as pulling together the presenting problems of the client and developing theories regarding how and why the problems may have developed. It was defined by Pearson in 1989 (p.37) as “A hypothesis about the nature of a psychological difficulty or difficulties underlying the problems on the patients problem list”
The process of formulation can often enable clinicians to work within useful descriptive processes and helps both the client and practitioner make inferences about what has caused and is maintaining the presenting problem. (Kuyken et al 2005)
In 2007 Westbrook et al pulled together many definitions of formulation to conclude one core definition. They felt that it was:-
A description of current problems,
An account of how and why the problems had developed,
An analysis of the key maintaining processes hypothesised to keep the problem going.
Westbrook also felt that the formulation process helped the therapist and client make sense of the confusion caused by a collection of symptoms thereby helping to combat the demoralised feelings often found in clients during the initial stages.
One of the most simple forms of the cognitive models is the ABC model, Trower et al (1998 p.3) summarised this model as “An activating event, A, leads to emotional and behavioural consequences at C, with the emotional consequences being mediated by beliefs at B” this simplistic model can be seen to work well with the people who care for patients with a dementia. Often a diagnosis can act as an activating event for them, triggering their long- held belief and leading to behavioural consequences. Low mood and anxiety can be a common occurrence for carers as their long held beliefs about dementia and feelings of loss and bereavement following diagnosis can become overwhelming whilst trying to deal with the day to day difficulties posed by caring for someone with a dementia.
Becks cognitive model of depression case formulation looks at early life experiences leading to the formation of dysfunctional beliefs and assumptions which are then activated by a critical incident. This can then effect cognitions, behaviours and affect. Although Beck deigned the model for use with a purely depressed client it can be seen to work well with people experiencing low mood as a result of their memory impairment. Often it seems that a client’s core beliefs and values are overlooked, particularly by nurses focused on problem solving and treatment, therefore using a model such as this can help us to explore the reasons behind client’s behaviours and their feelings regarding their difficulties thus leading to a better informed treatment plan.
When working with older people Beck’s standard formulation model Laidlaw et al (2004) felt that it should be added to in order to enhance the formulation, they suggested including information such as:
Cohort beliefs,
Role investments,
Socio-cultural context,
Physical health.
They felt that this added information would hold the promise of an improved treatment outcome.
It is during this middle phase of CBT that specific cognitive and /or behavioural skills are taught to the patient, with the aim of practising them until they are learned so well that the client can resolve one or more of their identified difficulties. (Laidlaw et al 1995)
One might question how a person with dementia could be treated with CBT when cognitive skills suffer the greatest impairment (Laidlaw et al 2004). However a lot can be done from the moment of diagnosis to alleviate the distress of a client experiencing memory problems.
Bryden (2002) felt that psychotherapy could help to modify common adaptive responses to dementia. She thought that the aims of treatment should be to increase emotional security and maintain a sense of self worth and identity as well as increasing the number of pleasurable events through behavioural treatments. Behavioural treatments for people with a dementia can be particularly useful in the later stages when the client may have experienced a significant loss of pleasurable events through cognitive decline. Research also suggests that behavioural interventions work well in the treatment of depression in older adults. (Ten, Gallagher-Thompson 1991 and lewinshon and Gotleib 1995)
In 1995 Lewinshon and Gotleib explored the benefits of behavioural activation further. In their model the functional relationship between depression and everyday life events is stressed and suggests that events that disrupt functioning are likely to increase the vulnerability to the development of depression. They felt that this was particularly so if the disruption results in an increase of negative events or a reduction in positive events. We can see how easily this may happen in a client diagnosed with dementia, as people increasingly withdraw from pleasurable activities for fear of failure.
In the early stages Bryden (200) highlighted that the focus of CBT should be on how the client viewed their cognitive decline, what their negative thoughts were and what prompted them. She felt that a purely medical model could lead to the client viewing things in a very negative way, and that CBT could help them to re-frame and think of dementia as a personal experience of adaptation. Laidlaw et al (2004) felt that during these early stages in a dementia psychological distress may occur because the client feel incompetent at completing even basic, routine daily tasks. They discussed how small changes in the environment could help to minimise this distress, either by simplifying the challenges or reinforcing cultural values that allow them to feel comfortable being relieved of responsibility.
There is obvious themes to the outcomes of working with people with dementia, that of relieving client distress and increasing pleasurable events, however the obvious obstacle when using this form of therapy with people with memory impairment can be the difficulty of them keeping records and using learned techniques when not with the therapist.
There can be points to consider in overcoming potential difficulties,
Becoming familiar with the clients strengths and weaknesses,
Keep sessions structured,
Make goals realistic and simple,
Utilise all available tools, such as audio tapes, notebooks and index cards,
Be mindful of the role of loss and grief.
(Laidlaw et al 2004)
They also felt that it was important to involve family members or formal care-givers in treatment delivery. Although generally family are not included in techniques due to the possible inability to dissociate the families thinking and actions from the clients it is felt that for people with memory problems treatment plans should be formulated with family members and relevant personnel.
When I have discussed some of these difficulties with my work colleagues at the memory clinic, it has been suggested that the client might be encouraged to provide themselves with written prompts during the session. These can then be utilised at home at the appropriate time i.e. when experiencing high levels of anxiety, reminders for completing homework etc. The family can then provide the client with the prompts they had previously created for themselves, reducing family stress and avoiding the family becoming pseudo therapists to the client.
The final stage of therapy can be seen as the time where treatment termination and completion of treatment are prepared for. Laidlaw et al (1995) felt that this was also the point where relapse prevention was planned. Hopefully by this phase the client and their carer where appropriate, will have learned skills to help them cope with potential distress.
“Because cognitive therapy is time limited, many of the patient’s problems will remain unsolved at the end of treatment. By the time treatment ends, the patient will have enough psychological tools to approach and solve problems on their own, knowing that the therapist is available for booster sessions if necessary.”
(Beck and Emery, 1985. P. 172)
The importance of handling the termination of the therapeutic relationship was explored by Laidlaw et al in 1995 when they discussed the importance of the relationship in the life of the older person, which may mean that they don’t want it to end, they felt that clients in the older age group may find it difficult to find another person to share their thoughts and feelings with and the fear of further psychological distress leading them to need additional assistance.
The importance of preparing the client in the first session for termination and relapse prevention was also highlighted by Judith Beck in 1995. Laidlaw et al (1995) suggests ways in which the therapist can help the client accept the end of the treatment and begin to think in terms of relapse prevention. Firstly they suggest that the client is asked to record the main skills they have learned and then think about the main ones they are likely to use again. Finally they recommend that the client and therapist create a “survival guide” where key skills are recorded in a notebook and are lined to the anticipated troublesome situations.
Laidlaw also felt that it was important that the client knows the door can be left open should things become difficult in the future, they stated that knowing they can contact the therapist in the event of relapse can be comforting to most older people at the end of therapy.
As we have discussed, anxiety and depression is a common problem in dementia and the diagnosis of a dementia in its self can be a traumatic personal experience. Many factors can affect how a person manages the diagnosis including their pre-morbid psychological status and their social context and support structure ( Bryden 2002).
Although there is sparse supporting evidence and few control studies available regarding the use of CBT in dementia Laidlaw et al argue that the literature evidence available clearly support the use of CBT techniques in alleviating depression in people with a dementia. It is clear too that development of further models for helping people with dementia and their carers manage their difficulties is essential. What should be avoided in our enthusiasm to provide this additional support however is the giving of false hope to clients and carers, Woods (1999) felt that leading them to have unrealistic expectations of interventions could eventually lead to disappointment. He went on to discuss how any changes noted are likely to be small-however there could be a lot to be gained simply by the client being involved in the process, such as a feeling of success and a moment of meaningful contact with another person.
It may be then, that the most we can hope for when working with the person with dementia using CBT is that their sense of personhood is maintained, Kitwood & Bredin (1992) highlighted that the indicators of well being on dementia could be seen as the expression of four “global states”:
A sense of personal worth-a deep self esteem;
A sense of agency-to have control over their personal life, to achieve something;
A sense of social confidence-of being at ease with someone; and finally
A sense of hope-feeling secure, trusting that all will be well.
Although these states may only be achieved fleetingly, this at least can be seen as a positive outcome in dementia care.
As a final note, I had wanted to end here, and to leave this piece of work on a positive tone. However, this is the real world, a system ruled by outcome, by six sessions and you’re out. One of the main principles of memory clinics is to maintain contact and support a client and their carer throughout the life of their illness, with the increase in referrals and increase in expectations, what could the future hold for the memory clinic? It is unlikely that the well funded, well staffed clinic will receive further investment. What we may see is an increase in caseload size leading to less intensive, less personalised care. Thus moving away from the core values of the clinic.
How then can we as therapists leave the person with dementia after the allotted time, knowing that their need will be on-going, only worsening with time and that it will be necessary to be available when they are in crisis, yet being informed that we will only be paid for the outcome, for an improving SARN score. Despite what we may think, none of us go into the caring profession for purely altruistic reasons, what hope for our own long term mental health, if we cannot feel the satisfaction of a job well done?
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