Beyond the words
An integrative arts psychotherapist tells of her experience of working creatively and
relationally with clients with dementia, and of her mother’s continuing journey into
dementia.
In October 2004, the same week I started an MA in Integrative Arts Psychotherapy, my mother was
diagnosed with Alzheimer’s disease. Being alongside her on this journey over the last eight years has
had a significant impact on who I have become as a psychotherapist. Similarly, my training has
profoundly influenced who I have been able to become in the changing landscape of my relationship
with my mother. Linked from the beginning, these two journeys continue to inform each other.
From the start I was grateful to my psychotherapeutic journey for enabling me to face some of the
grief at the thought of losing my mother. Being able to sit with my own feelings made me more
equipped to be with my mother’s, as she struggled to make sense of what was happening to her and
how her life was changing.
There have been losses at each stage of this long journey, and some unexpected gifts. As I have
adjusted to each loss, attempting to stay open to experiencing them, I have been able to see deeper
layers of self emerging in my mother, those which exist beyond language and cognition, and to begin
to know these layers in myself.
My personal experience with my mother nurtured an interest in working therapeutically with this
client group, and during my training I held voluntary placements as an integrative arts
psychotherapist at the hospice in Hove, and at Age UK in Brighton. I had the opportunity to work in
these settings with clients with dementia.
I have been deeply challenged by this experience, and believe now that living with cognitive change
does not have to be characterised entirely in a negative way. My question instead is whether there is
something to be gained and discovered through living with dementia?
I am grateful to a psychotherapeutic model of growth, which has given me a different lens through
which to view the journey; one which doesn’t focus solely on the physical aspects of the disease, the
search for treatment and finding a cure. It is the gifts which this wider lens has given me that I wish
to focus on in this article.
For my mother, receiving a diagnosis of dementia felt like the beginning of the end, which is maybe
not surprising given the prevalence of the medical model in which dementia is typically viewed; as a
journey of inexorable physical decline. Depression followed diagnosis and started to make this
downward spiral a self fulfilling prophesy. Many of the difficulties in the early days were as much
due to the depression, which the diagnosis brought with it, as to the dementia itself. Depression
added to her fear and confusion and feelings of worthlessness, and led to her withdrawal, isolation
and apathy and a horror of what might lie ahead.
Our personality and our life story can influence the way we react to disease and no two people will
respond the same way to a journey with dementia. My mother fluctuated between feeling defeated
by her diagnosis and trying to fight and deny it. Seeking counselling or psychotherapy in order to
explore what living with dementia might mean to her was not within her personal experience, nor
was it offered.
Statistics show that older people in general are underrepresented in accessing psychological
services, and there is little dedicated provision for people with dementia. (1) In my view, she missed
out on an opportunity not only to attend to her depression, but to explore in a safe and confidential
relationship her changing sense of self as she adapted to a new way of being in the world with
cognitive change.
There are perhaps many reasons for scepticism about the value of psychotherapy and counselling
for people with dementia, including the dominance of cognitive paradigms, limits of research
methodologies, ageism and an absence of investment in both time and money. (2)
Staying in relationship with clients and with my mother as their dementia progressed has convinced
me of the value of this work, and has for me challenged many commonly held stereotypes about the
disease, the majority of which reinforce a general culture of hopelessness and a belief that there is
little we can do. (3)
The experience has shown me that people with dementia are not only still able to meaningfully
interact with another person if we are open to receiving them, but that as the disease progresses a
person with dementia may be even more open to therapeutic change, precisely because of the
changes to the brain which can affect one’s level of inhibition. A person with dementia can be more
vulnerable and more open, stripped of the usual defences which can sometimes mask our true
feelings. (4)
Supported by the skills I was learning in my training, I was grateful to be able to keep connected with
my mother as the disease progressed and her thoughts and words became more tangled and
confused. I grew increasingly attentive to non verbal clues, attempting to sense what else was being
communicated beyond the words. Affect and emotion became easier to read than the spoken
communication about what was happening. I tried increasingly to enter into her perceptual world,
employing attentive observation and curiosity as well as the skill of empathy.
A key myth in dementia care is that a person is no longer themselves once affected by the disease,
that somehow the whole person is impaired rather than just aspects of their brain. Cultural
conceptions of it being a “living death”, reinforce a trend of depersonalising someone with
dementia, and responses such as “it’s not him, it’s the dementia speaking”, “he was no longer my
husband,” are typical of the way changes in a person are understood.
Whilst I am not denying the very real challenges for anyone involved in a journey with dementia, I
believe that at the heart of some of these stereotypes is an over simplistic and one dimensional
conception of personhood which is overly dominated by cognition. A broader definition recognises
that a person is far more than their thoughts alone and that the essence of a person remains,
despite changes to the brain. (5)
In my training I was discovering the use of imagery and the power of the arts in enabling clients to
access deeper layers of self beyond cognition and words. An underlying premise of integrative arts
psychotherapy is that restricting ourselves to words alone as the medium for communication in the
therapy room is unnecessarily limiting, given that we perceive the world through all our senses.
(6)Clients can choose from crayons and paint, music, drama and movement as available media of
expression, as well as sand tray figures, puppets and clay. Much can also be communicated in the
silence if we are open to receiving it.
Because of the multi sensorial nature of human experience, and because not all of the brain is
affected by dementia at once, (7) I found that communicating through the arts, the senses and the
imagination remained possible for people with dementia. We do not only have episodic memories
but emotional memories, which transcend the limits of time and space. Just as when we hear a song
from the past for example and we are brought right back to that moment, engaging with the senses
can bring back those emotional memories for a person with dementia along with the thoughts,
dreams and hopes; ones which might otherwise have been forgotten. (8)
Cognition is not the only measure of how change is affected in psychotherapy. For
psychotherapeutic change to be truly understood we need to see it in relational terms. For many
“ the relationship is the therapy.” (9)
The same is true when working with clients with dementia. If we refrain from always trying to regain
the former sense of self of the person with dementia, with all their previous cognitive faculties, and
attempt instead to open ourselves to a heightened interaction based on truly being present to
another, we can remain in relationship throughout the disease. We can offer the person recognition
and validation of themselves in the essence of their being. We can sit alongside them in the not
knowing, in contact with the full spectrum of emotional or imaginative landscapes they may bring, at
whatever stage of their dementia.
For some people a psychotherapeutic relationship can be the first time they’ve ever truly been
acknowledged as a person. This can be the same for a person with dementia. Even if it is unable to
be known cognitively, a good relationship can slowly be internalised in the emotional memory of the
client. (10)It is in this relational sphere that far reaching psychological change can take place. That the
client may not remember the therapist’s name or hold a cognitive memory of the session is not the
most essential matter.
Making sense of ourselves and developing a sense of self are both central to the psychotherapeutic
process, and particularly important when neurological functioning is changing. Sadly, however, the
overwhelming needs of this client group for connection, with others and with themselves, are
typically left unmet, and many remain lost, isolated and withdrawn. People with dementia are at
great risk of being socially isolated even when they live in communal settings. (11)
My mother is now in the advanced stages of her disease and is in a nursing home in Brighton,
needing help with feeding, dressing and all aspects of physical care. She has very little language, is
disorientated in time and place, and has not known me as her daughter for many years. Despite
these changes or perhaps because of them we have a closeness of connection different and deeper
than before. The absence of usual forms of communication can be a rich place of encounter.
Without memories and roles we have only the here and now, and perhaps it is in this place that
there is room for something new?
Dementia is one of the biggest health and social care challenges facing the UK today. Sussex, with its
high number of older people, has more people living with dementia than anywhere else in the
country and figures continue to rise. (12) A new generation is coming through to become the next
generation prone to living with dementia, and this is a generation with different expectations of
services. There is so much our profession has to offer to make the future landscape of dementia
care and treatment a more fertile one, or at the very least a less barren one.
Catherine Rees is an Integrative Arts Psychotherapist with an MA from the Institute for
Arts in Therapy and Education and accreditation through the United Kingdom Council for
Psychotherapy (UKCP). She has worked with adults of all ages across a spectrum of life
issues, and is dedicated to working with people affected by dementia.
For more information see www.beyondthewords.org.uk
1 Centre for Policy on Ageing (2009), “Ageism and age discrimination in mental health care in the United Kingdom.”
2 Kitwood, T.(2011)Dementia Reconsidered, Maidenhead:Open University Press
3 (ed) Waller,D. (2002) Arts Therapies and Progressive Illness, Hove: Brunner-Routledge
4 Lipinska,D.(2009)Person-Centred Counselling for People with Dementia, London:Jessica Kingsley
5 Kitwood, T. (2011)
6 Institute for Arts in Therapy and Education www.artspsychotherapy.org
7 Zeisel,J. (2011)I’m Still Here,London:Piatkus
8 Sacks, O (2007) Musicophilia. Tales of Music and the Brain, London: Picador.
9 Kahn, M. (1991) Between Therapist and Client. Revised edition, New York: Henry Holt.
10 Turnbull, O., Evangelos, A., Kaplan-Solms, K and Solms, M. (2006) ‘The developing transference in amnesia: Changes in
interpersonal relationship, despite profound episodic-memory loss.’ Neuro-Psychoanalysis 8 (2): 199-204.
11 Kitwood,T (2011)
12Waterhouse, N, (2012) Sussex Partnership NHS Foundation Trust.