Rose Lodge care home in Exmouth is pioneering therapeutic work for people with advanced dementia. As the counsellor undertaking this work over the past two years, I hadn’t realised how unusual it was to offer regular therapeutic support to people during the latter stages of dementia until I met Sally Knocker in the Meaningful Care Matters team. The most comparable work in this area is most notably the ‘Adaptive Interaction’ approach (AJ Astell, 2022, Ellis and Astell, 2016).
I have been fortunate to have worked in social care settings ever since I got my first job in a care home during my teens. Unbeknown to me at the time, I now believe that these formative career experiences instilled in me a deep sense of the value of the human experience and certainly, caring for others at such a young age developed my ability to feel comfortable in the intimate presence of another.
When I was a care worker over 25 years ago, there was very much a focus on doing tasks rather than being with another. But at the time, my impulsive teenage brain didn’t think much of those ‘rules.’ I came into the role without any sense of separation between myself or the people I was caring for and so I found it very easy to love and be loved by them. This is a quality and instinct that I now know is something that the Butterfly Approach to dementia care looks for in team members.
I since went to on qualify and practice as a Children and Families Social Worker and in 2018 retrained as an Integrative Counsellor, but my experiences as a care worker have remained with me. It is a joy to me that 20 years after hanging up my care worker boots, I can return to where it all began and use my therapeutic skills to improve the lived experience of people during the final stages of their life.
Giving exquisite attention
Rose Lodge initially approached me as a prospective counsellor for the staff team, but it was the owner Peter De Groot, who invited me to consider working directly with people living with dementia. After accepting this proposition, I admit to having a little panic and thinking ‘What have I done? What on earth qualifies me to do this work?’ But then it occurred to me, why shouldn’t I be able to work therapeutically with people with dementia? Undoubtedly, there are huge barriers to this work, but my approach always aims to meet a person exactly where they are and be with what presents itself. Why should working with people living with dementia require anything different?
When a person’s dementia has advanced to the stage where they are predominantly non-verbal, alternative ways of communicating are necessary if that person is to experience feeling truly seen and held. When I was a counselling student I had a wonderful tutor, a very inspirational man who introduced to me to the notion of offering another person our ‘exquisite attention.’ What this means to me is to be totally and completely with the other; you are not doing anything else. You are noticing everything; the breath, the movements, the facial expression… and from this place of exquisite attention it is possible to become completely attuned to the other person. You are really ‘being with’ and it is possible to strike up a body-to-body conversation which enables me, as the therapist, to gain insight into how the other person is experiencing their emotional state – their internal emotional world.
Understanding concepts of dysregulation
I am often asked to work with people who are experiencing a degree of anxiety and distress. During the early stages of my work, my aim is to support the other person to regulate their emotional state. What it means to be ‘regulated’ in layperson’s terms, is to be in a state of internal calm which is optimum for social engagement. I have often encountered people trying to speak and then the wrong words come out, or no words come out at all. It must be devastating to lose the ability to express yourself and to lose touch with what is happening around you. Even the most wonderful care home environments must be overwhelming at times and so it makes sense to me that people who find themselves in this situation experience intense emotions of fear, anger, and frustration at times. My anecdotal experience is that if the other can be helped from a dysregulated emotional state and into a regulated emotional state, their ability to perceive the world around them improves and those stuck words might just loosen up a little.
I mainly work with people the care teams are struggling to reach, those individuals who are unable to engage with the day-to-day activities offered by staff. I spend between one and two hours, up to three times a week with each of the people I work with. To create an appropriate therapeutic environment, I am thoughtful about the details of each session. I choose the same quiet location and ensure that chair arrangements are the same on each visit. Additionally, I wear the same light perfume and at the beginning of every session, I play the same piece of classical music (which we know again is very right brain activating) in order to create further opportunities for the other person to gain a sense of familiarity and ‘place’ the session.
Finding ‘Jane’
‘Jane’ was the very first person I worked with at Rose Lodge and I believe that despite the very advanced nature of her dementia, we were able to establish a deep sense of connection. Jane was non-verbal, with the exception of when she was distressed, and she would repeat the same two sentences over and over again in varying pitch and intensity. Other than that, there was almost no verbal communication. Her facial expression was severe-looking nearly all of the time and historically she had clawed at her skin during times when she was extremely agitated. She wasn’t mobile and rarely offered any discernible response to environmental stimulus. The word ‘locked-in’ really came to mind. I was asked to work with her because the care teams wanted to alleviate her distress and find opportunities for her to engage and communicate with one another.
Beyond words
I vividly recall sitting with Jane for the first time. She was clearly distressed and emotionally overwhelmed, manifesting in a rigid body posture, anxious facial expression and repeating her usual sentences.
When faced with the overwhelming effect of another, we often feel the call to intervene verbally. Perhaps our intention is to find out what is wrong and/or attempt to help and support the other person in this way. Often this can be an effective response, however, when the other is in a state of dysregulation and/or does not have the capacity for verbal communication, setting the stage for a talking exchange, runs the risk of exacerbating underlying feelings of frustration and/or incompetence or simply has no impact at all. Instead, a process of co-regulation requires no verbal communication at all and can have the effect of settling the nervous system of the other.
For co-regulation to be effective, the therapist’s own nervous system needs to be regulated. Put simply, during my work with Jane, I needed to be in a state of internal calm, to be her ‘anchor in the storm’ so to speak. Rather than joining Jane in her overwhelm or seeking to change or fix her emotional state, I sat alongside her, demonstrating presence, acceptance and a regulated emotional state, all the while offering my ‘exquisite attention’.
Not trying to fix anything
I was meeting Jane exactly where she was. In terms of intentionality, I was simply alongside and relating to somebody who was in a deeply distressed state. As she repeated the same sentence, I gently mirrored her words, slowing their pace and intensity, all the while offering that exquisite attention. During our first session, we sat just like this and over the course of an hour, Jane’s expressions of distress gradually diminished until her nervous system was regulated – this was visible when the rigidity left her body, her facial expression became softer and her verbal expressions of distress had ceased. From this place of internal calm, Jane looked at me so intently and with such awareness of my presence, that I truly felt that we had reached a place where she was present with me in that moment.
In response, I continued to sit alongside her, attending to her with my exquisite attention and mirroring her breath, facial expression and movements and we just got to know each other in that way. When, intuitively, I felt her being open to a closer connection, I very gradually moved my hand towards her, until finally my fingertips were touching hers… in response she moved her hand towards mine, picked it up and held it gently. We stayed just like that. I didn’t change anything.
I was all the time just following Jane’s lead. For people living with advanced dementia, therapeutic work has the potential to offer choice, control and opportunities for self-expression in a world where this would be otherwise unavailable. The act of simply slowing an interaction right down and providing time and space for a response created an opportunity for Jane to seek and accept human connection.
As our work together progressed, Jane’s expressions of distress during the sessions became much shorter until they diminished altogether. Simultaneously, I also noticed that Jane’s potential for reciprocity and communication increased. She would often smile when I greeted her and offer a ‘hello’ and always, during our sessions together, Jane honoured me by offering me the same exquisite attention that I offered her. There were times when I could see in her eyes that she was drinking in the opportunity for connection and occasionally during these times she would nod and say ‘yes’ as if in confirmation that we were getting it just right.
To the credit of Rose Lodge, I worked with Jane in this way three times a week for over a year. The feedback from the care team was that not only were Jane’s distress levels reducing during our sessions together, but outside the session she was more at peace and responsive.
Jane and I didn’t need anything extra to make our sessions meaningful. Just me and her and a little bit of Chopin. For some of the other people I work with, I have found it incredibly meaningful to connect with aspects of their culture or faith during our sessions. One woman who was otherwise unresponsive, almost always lifts her head and demonstrates recognition to familiar prayer or hymns. (I discovered this by seeing a small tapestry with the Lord’s prayer on her wall and spontaneously bringing it down to read to her.) By paying close, exquisite attention to the other, I have found it possible to find opportunities for engagement and connection where, at first glance, this might not feel possible.
A call to action to other therapists
It is my belief that working with people living with advanced dementia has made me a better therapist. My ability to become highly attuned to the internal experience of the other and attend to the non-verbal – what is experienced but remains unspoken – enhances my counselling practice in general.
I’ve learned so much from the people who have allowed me to work with them. It is my hope that other therapists will venture into this still relatively unchartered territory and that other care homes will invest in this important work so that those with advanced dementia can continue to share the joy that flows from human connection.
This article is based on a longer interview with Sally Knocker, from the Meaningful Care Matters Team and the full podcast can be accessed by members of the Members’ Resource Portal.
References
Astell, AJ (2022) Using Adaptive Interaction to Simplify Caregiver’s Communication with People with Dementia Who Cannot Speak, Methods article, Front. Commun., 12 January 2022, Sec. Psychology of Language, Volume 6.
https://www.frontiersin.org/articles/10.3389/fcomm.2021.689439/full
Ellis, M and Astell, AJ (2017) Adaptive Interaction and dementia: how to communicate without speech, Jessica Kingsley Publishers
Key Points
Rose Lodge care home in Exmouth has been investing in a therapist ‘in residence’ working every week with people in the later experiences of dementia or those whom the team find hard to reach.
Mary’s approach is to give focused attention to people based on body-to-body connection rather than words – as much as possible allowing the person with dementia to take the lead.
Mary draws on concepts of dysregulation and believes that many people living with dementia are often facing a dysregulated state, which makes connection very difficult.
Over time, these encounters have resulted in rich moments of relationship and have also enabled the person to be more content and connected outside of the sessions.
Mary feels that working with people living with dementia has also enhanced her skills in her general counselling practice.
It is unusual for care homes to invest in this kind of specialist input, and it is hoped that this article will inspire others to explore this.