Monthly Archives: May 2016

Working relationally with clients living with a neurodegenerative disorder

Dr. Helen Nicholas

Dr. Helen Nicholas

The book, Ageing with Grace, by David Snowdon was an inspiration for me when I began research with older adults diagnosed with a neurodegenerative disorder.  The question, Why do some people go on to develop dementia, whilst others don’t?, is one that many researchers have attempted to answer over the years. Despite all the findings so far, and vast amounts of research into biomarkers and genetics, the answers or potential causes remain unclear. When thinking about potential factors, some psychologists, like myself, turn to personality and to levels of social activity. Personality is fairly stable over the life time so studying what individuals were like in their 40s – before the onset of the disease – can give us a clue to these potential protective factors. By identifying certain key personality features that are associated with Alzheimer’s disease (AD) may identify clients for whom early intervention is appropriate. This could include premorbid information on social variables, such as the number of close friends and levels of social, and physical engagement. Preventative measures are key to tackling this progressive, degenerative disease. Indeed, much of the work carried out by counselling psychologists with people living with a neurodegenerative disorder ranges over the progression of the disease, from preventative measures to diagnosis and life after diagnosis.

Reflecting on my work as a young psychologist within a memory clinic and older adult service, I seem to recall the brevity of the assessment sessions. After the initial history taking, I conducted a battery of psychometric tests to confirm the suspected diagnosis of AD. The psychiatrist would then talk to the client and carer about the future and appropriate medication that could slow the progression down. The client and carer, their suspicions also unfortunately confirmed, would look puzzled, confused and worried. This was one of the difficult parts of my clinical work. I now advocate for follow up sessions, where counselling psychologists work closely with the client and carer providing therapeutic interventions to help them both cope and come to terms with their future, and to focus more on quality of life rather than the progression of the disease.

Within counselling psychology, the therapeutic relationship and relational focus is a key part of our training and professional work. We are highly skilled to understand the biological/neurological, cognitive and interpersonal/relational aspects of human functioning. A strong relational element when discussing memory difficulties, the progression of the disease and what the future may hold is important and necessary. The relational dimension is not often explored in the current mainstream literature on AD. Focus tends to be on the assessment and diagnosis, some focusing on behaviour that challenges and the psychological and behavioural symptoms of AD. As well as offering practical support, counselling psychologists can use empathy to engage with the world of the client. A skill that requires the psychologist to be with the client rather than to do to and it requires the psychologist to enter into the world of the client with a neurodegenerative disorder on the basis of their understanding and experience. This may help the client and carer to elucidate their own experience as valid and valuable, thus promoting a non-judgmental, and non-pathologising stance. Alongside the appropriate assessment(s) and battery of psychometric test, it is important to think about alternative or co-existing explanations to support individuals with their behaviour. I will present a clinical case to illustrate how the therapeutic relationship and understanding of the historic, and personal background of the client was essential in reducing his negative reactions to staff.

Mr. Davies, a 73-year-old gentleman diagnosed with an intellectual disability, was referred to the psychology department as he became more agitated on the hospital ward. The ward staff were concerned that he was developing dementia and requested a formal assessment. A holistic assessment was conducted, by supporting Mr. Davies to tell his story, understanding how important his independence was for him, and helping him come up with solutions on how he can express his needs more appropriately, was key to the success of him regulating his emotions more effectively.

Working relationally with Mr. Davies was crucial in engaging in his narrative and life story. We worked collaboratively to identify some particular situations that seemed to trigger his anger and irritation at staff and other clients on the ward. Our work incorporated educating staff about his needs, wishes and values. For example, when staff locked the cupboard where the tea bags were stored, Mr. Davies worried that he would not be able to make himself a cup of tea. These thoughts lead him to believe that he needed to hoard the tea bags. He became skilled at knowing when the cupboard was unlocked, and when caught was reprimanded by staff causing him to become defensive, angry and verbally abusive.

The team agreed to provide Mr. Davies with tea making facilities in his own room. By understanding his deprived background through the life and social story work we completed, the ward staff were better able to carry out their roles in a more supportive and person-centred way with Mr. Davies. The incidents of agitation reduced significantly and he was able to relate better to the staff by learning more appropriate ways of communicating his needs. Mr. Davies and I worked on a variety of social stories over the years, supporting him in personal hygiene difficulties and establishing routines that he felt more comfortable with. We formed a strong therapeutic relationship. I believe that without the relational element, Mr. Davies would not have felt comfortable with some of the work that we did together and this foundation supported him in forming further meaningful relationships with ward staff and friendships with clients on the ward. 

Typically, counselling psychologists work closely with teams and professional colleagues such as, occupational therapists, physiotherapists, dieticians, speech and language therapists and social workers to ensure the needs of clients are met. Working collaboratively, carrying out a comprehensive psychological assessment, often including psychometric testing and formulating a treatment plan for each client provides a clear and concise person-centred pathway to wellbeing and recovery. Counselling psychologists are well suited to providing useful and valuable in-house training on a variety of topics and through consultation are able to contribute to care plans. Multi-disciplinary team working provides unique opportunities for all staff to discuss the client’s difficulties and to express their views on how to help make the client’s experience and quality of life better. We are also uniquely skilled in working relationally with clients with neurodegenerative diseases, as well as carrying out the more diagnosis-based assessments. I think a combination of the two is important to fully understand the client and the impact of the disease on their quality of life.

About the author:

Dr. Helen Nicholas is an HCPC registered practitioner psychologist, BPS chartered psychologist, and senior lecturer at the University of Worcester, United Kingdom. Helen holds a Doctorate (PsychD) in psychotherapeutic and counselling psychology from the University of Surrey and works in academia, as well as a independent practice. She is the current chair of the British Psychological Society (BPS), Division of Counselling Psychology (DCoP) and has held a variety of voluntary positions in the BPS and DCoP over the years. Helen specialises in working over the lifespan with adolescents, adults and older adults and has a particular interest in depression, anxiety, trauma (EMDR) and neurodegenerative diseases. Helen has published in the field of Alzheimer’s disease, Dementia, Personality traits, work-life balance and counselling psychology, and is committed to the discipline as both researcher and a practitioner. Helen has a wide range of experience working in settings such as the NHS, Adult mental health, Old age psychiatry, research, the voluntary sector, in private hospitals, and in academia.