The Contented Dementia Trust’s response to the Alzheimer’s Society’s view of SPECAL

This article details Contented Dementia Trust’s response to the Alzheimer’s Society’s view1 of SPECAL (as published on-line)

The Alzheimer’s Society notes that ‘The SPECAL approach is popular with some carers and includes elements that do reflect established good practice. Its emphasis on the feelings and emotions of people with dementia is a strength, for example.’

The Alzheimer’s Society does however continue to have ‘serious misgivings about how SPECAL is implemented’.  The Contented Dementia Trust considers and addresses each of these misgivings in this response.

The single most important point to consider and address is the failure of the Alzheimer’s Society to take account of the core principles underpinning the SPECAL approach.  Its current2 website statement omits any reference to the SPECAL Photograph Album, as if it doesn’t exist3.The SPECAL Photograph Album analogy, which offers a simple, visually accessible explanation of how memory is affected by dementia, is the key to understanding the SPECAL approach; to ignore it  is the equivalent of trying to make sense of a piece of Greek literature without an initial study of the Greek alphabet.

The Alzheimer’s Society holds the view that ‘much of the approach runs contrary to the practice of person-centred care as established by leaders in the dementia care field.’

The practical application of universal person-centred principles provides the starting point for the SPECAL approach.  Well-being can be summarised as a universal need for every human being and dependent on four fundamental feelings:  a sense of Personal worth, a sense of Autonomy, a sense of Social ease and a sense of Trust that all will be well.  The Contented Dementia Trust uses the acronym P-A-S-T to represent these four feelings, which combine to create a sense of confidence. This is particularly important for the person with dementia, enabling them to operate at maximum competency.   All courses run by the Contented Dementia Trust for families, friends and professionals begin with a presentation and discussion of the importance of a sense of P-A-S-T for every human being, regardless of age, gender, race, creed, colour or medical condition.

The seven outcomes defined by the National Dementia Declaration echo the precepts that underpin the work of the Contented Dementia Trust.  They are delivered by the SPECAL approach, as anyone who has hands-on knowledge of applying it, or has observed it in practice, will testify.

The Alzheimer’s Society states that it ‘struggles to see how SPECAL can help deliver such outcomes’ and sets out its reservations regarding the SPECAL approach. 

The Contented Dementia Trust considers that dementia, once medically diagnosed, is best understood, for the purposes of management, as a disability characterised by the random, intermittent and increasing failure to store the facts of what has just happened whilst storing feelings in the normal way.

The Contented Dementia Trust further considers that a common sense approach to communication is predicated on both parties storing facts and feelings at all times.   Where one of the parties is subject to the disability of dementia, common sense will not be useful.  Some form of adjustment must be made by the party without dementia in order to take the disability into account.  The Contented Dementia Trust calls the adaptation of common sense to take account of dementia ‘SPECAL sense’, recognising that feelings, which store all the time, become hugely significant for the person with dementia and that there is a moral imperative for others to do their best to promote a sense of well-being for the person at all times.

The rationale for SPECAL sense is made explicit and accessible through the SPECAL Photograph Album, the essential key to an understanding of the subjective experience of the person with dementia.

With this basic understanding in place, each of the outcomes is considered in turn, explaining how SPECAL sense can deliver them in a fully person-centred, dementia-specific way

1. I have personal choice and control or influence over decisions about me

The importance of this universal value is reflected in the Contented Dementia Trust’s promotion of P-A-S-T, in particular the aspect of ‘A’ for autonomy which is fundamental to SPECAL-informed care.  All behaviour has meaning, and the views expressed by the person with dementia are systematically recorded using SPECAL Observational Tracking (SPOT)4.  Like all SPECAL tools, this has been designed to ensure that the well-being of the person with dementia is protected and fostered at all times.     

2. I know that services are designed around me and my needs 

SPECAL-informed carers are led by ‘the expert, the person with dementia’. Carers pay close attention at all times to the person’s words and body language using SPOT, enabling the person to express their personal choice and influence decisions relating to their needs and providing a clear indication what is (or is not) acceptable to them.

3. I have support that helps me live my life 

The SPECAL approach sees the person with dementia as expert in their own experience of living with their disability and is therefore led at all times by their communication of what is, or is not, acceptable to them.  A SPECAL-informed companion is defined as one who has adopted the SPECAL approach to dementia care and is able to protect and promote the person’s sense of P-A-S-T.  When the person with dementia is supported in this way, the result is relatively seamless transitions from moment to moment throughout the activities of daily life, replacing anxious questioning and loss of P-A-S-T with a continuity of acceptable experience for everyone concerned

4. I have the knowledge and know-how to get what I need 

As noted above, the SPECAL approach to dementia management defines the person with dementia as the expert; the caregiver uses individualised profiling and SPOT to ensure that the person is able to express their choices and successfully communicate their needs. Communication which is centred around ‘I’ and ‘You’ in a common sense way is neither appropriate nor effective when dementia is present. The SPECAL approach avoids potential problems by using its ‘We-relationship’, a technique that enables the person with dementia to engage with the rest of the world without confusion or distress.

5. I live in an enabling and supportive environment where I feel valued and understood 

The SPECAL approach attaches great importance to feelings and aims to promote a sustainable sense of P-A-S-T, which incorporates personal worth and social ease, in each and every environment that the person with dementia finds themselves.  The comprehensive and individualised SPECAL Care Profile developed by each family for their person can be adapted for different companions and forms the basis for the single page SPECAL Passport which ensures an enabling and supportive environment wherever the person is at any time.  SPECAL Care is defined not by environment or by caregiver, but by the essential nature of what it achieves for the person in terms of well-being.

6. I have a sense of belonging and of being a valued part of family, community and civic life  

The SPECAL approach delivers a sense of P-A-S-T for people with dementia, meaning that the connections with their family, community and civic life are protected and sustained lifelong. The Contented Dementia Trust teaches families how to adapt their communication in ways which prioritise feelings of P-A-S-T and work positively with the disability in ever simpler ways as the condition progresses. The person’s ‘team’ is defined as everyone coming into contact with them, whether family, friends or professionals, all of whom have a part to play in promoting and sustaining well-being in their interactions.  Their induction to basic SPECAL sense is an integral part in the Contented Dementia Trust’s family-led model.

7. I know there is research going on which delivers a better life for me now and hope for the future. 

The Contented Dementia Trust supports and endorses medical research into the causes and prevention of dementia and is calling for far more research into non-pharmacological interventions in the field of care.  An initial evaluation of the SPECAL approach has been conducted in collaboration with King’s College London (2017 – 2018)5 and further investigations are planned, building on the positive findings of the Royal College of Nursing Report on SPECAL.6

In addition to its reservations about SPECAL’s ability to deliver on the seven outcomes established by the National Dementia Declaration, the Alzheimer’s Society has noted four key issues relating to SPECAL’s ‘commandments’ whilst continuing to ignore the SPECAL Photograph Album analogy, which is explained in detail in ‘Contented Dementia’7, the book it is quoting from. The Alzheimer’s Society also omits any reference to the Contented Dementia Trust’s widely circulated and freely available A5 booklet, which includes a simple pictorial representation of how memory is affected by dementia as represented by the SPECAL Photograph Album analogy. 

‘Contented Dementia’ was published in 2008 and continues to be a best seller, but some of its terminology now appears outdated and will be corrected in a forthcoming revision. The Trust continues to improve its presentation and explanation of the SPECAL Photograph Album analogy and its associated SPECAL sense and has replaced the term ‘commandments’ with ‘Golden Rules’ and modified some of the associated wording. For example: ‘Always agree’ is now expressed as ‘Don’t contradict’, leading to its associated tool of ‘Interesting… do tell me more’, which encourages more communication not less, with the expert leading the way. 

The Alzheimer’s Society8 states that:

‘We do not accept that a total ban on asking direct questions of someone with dementia – one of the ‘three commandments’ of SPECAL – is appropriate. People with dementia tell us that they want choice and control over their lives. A key goal of the Mental Capacity Act 2005 (England and Wales) is to empower people with dementia, by ensuring that they are supported and involved in decision-making as far as is practical. Contrary to all this, by prohibiting the asking of direct questions, SPECAL seems to disempower people with dementia and deny them an effective range of choices, from their diagnosis on.’

Each of SPECAL’s Three Golden Rules, the first of which is ‘Don’t ask direct questions’, has an associated SPECAL sense tool or technique.   In normal, common sense communication, questions demand an answer, whereas statements offer more options – to agree, disagree or ignore.  For the person with dementia, the consistent use of SPECAL’s Questionless Question technique offers the dignity of choice, the ability to decide for themselves whether and how they respond.  Statements offer far more choice than questions, and encourage more meaningful communication with those with dementia, not less.

The Alzheimer’s Society refers to:

‘a blanket approach to deception of people with dementia. A key element of SPECAL – what it calls ‘making a present of the past’ – in our view amounts to encouraging people with dementia to believe that they still living at a certain time in their younger life ‘ and states that ‘we struggle to see how the systematic deception of SPECAL, however well intentioned, is in the best interests of the person with dementia. Individualised care requires appreciating the relevance of someone’s unique history for the present, not encouraging the person to continually ‘live in the past’.

The disability of dementia, which reduces the retention and associated availability of recent facts while continuing to store the associated feelings, causes the person to use facts stored prior to dementia in order to make sense of their current surroundings.  The role of the SPECAL-informed companion is to ensure that the facts that the person chooses to use from their intact database of past events are linked directly with the activities of daily life in the present, as explained in the SPECAL monograph ‘Making a Present of the Past®’9.  A more detailed consideration of this issue is given in P Garner’s ‘Responses to the MHF Inquiry – Dementia – What is truth?’10         

SPECAL’s Second Golden Rule is ‘Listen to the expert’.  The individual with dementia is, by definition, the expert in managing their particular disability, choosing which facts from their past they use to make sense of their present; all that is required of their companion is to allow, rather than destroy, their perception – and acceptance – of their present. Individualised care demands specialised, individualised profiling to ensure that the uniqueness of someone’s pre-dementia past is recognised and at the same time is made relevant to the activities of daily life in the present.  Only in this way can caregivers ensure that the person sustains as close as possible an approximation of the life they would have led without dementia.

The Alzheimer’s Society considers that agreeing with everything the person with dementia says and providing ‘acceptable explanations’ for their visitors is unacceptable; it

‘struggle(s) to see how systematically deceiving someone with dementia can be part of an authentic trusting relationship in which the person’s voice is heard and their rights promoted.’

SPECAL’s Third Golden Rule is ‘Don’t contradict’ (formerly expressed as ‘Always agree’).    SPECAL sense recommends the ‘Interesting’ technique to avoid contradiction:  this uses as few words as possible, relying on eye contact and body language to convey to the person that what they say is interesting and valued.  The person’s natural reaction is to say more, not less, about whatever it is they wish to talk about.  To correct a person with dementia is to argue with them, and for a person for whom feelings are storing all the time and becoming increasingly significant, argument is not a good starting point. 

The Alzheimer’s Society concludes its statement by stating that:

‘SPECAL claims to offer the only approach to caring …. whereas it is only one of a range of approaches. In our view SPECAL is controlling and prescriptive and fails to acknowledge the unique needs of a person with dementia met from a range of approaches. It is for these reasons that the Alzheimer’s Society does not publicly support efforts to spread the use of SPECAL. 

Contented Dementia Trust has never claimed that SPECAL offers ‘the only approach to caring’. What is claimed is that the SPECAL approach is unique in offering the SPECAL Photograph Album understanding of the subjective experience of dementia, with its rationale for hope and its provision of a subtle and unusual blend of accepted skills and techniques.   

The Alzheimer’s Society’s overall perception of SPECAL as ‘controlling and prescriptive’ and ‘failing to acknowledge the unique needs of a person with dementia’ is the inevitable consequence of its continuing failure to acknowledge the existence of the SPECAL Photograph Album analogy, which is literally fundamental to any understanding, much less evaluation, of SPECAL theory.

In January 2013 His Honour Ian Alexander QC highlighted his personal interpretation of the position of the Alzheimer’s Society.11

The Contented Dementia Trust believes that the time has come for the Alzheimer’s Society to seek a better understanding of the SPECAL approach and the benefits it offers to all whose lives are affected by dementia. 

The Trust recommends that any individual or organisation concerned by the criticisms and misgivings expressed by the Alzheimer’s Society should explore the SPECAL Photograph Album analogy and consider its implications in the context of their understanding of the subjective experience of dementia before reaching a conclusion. 

Footnotes

  1. https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/specialised-early-care-alzheimers-specal(01.06.2019)
  2. June 2019
  3. Penelope Garner’s original monograph ‘The SPECAL Photograph Album – a way of understanding memory, ageing and the impact of dementia’ was first published in 2001 with a third edition in 2008; the analogy was also explained in Contented Dementia, has been reproduced in print and on-line and widely presented throughout the UK and beyond over the years.
  4. SPOT (SPECAL Observational Tracking) is an individualised person-specific toolkit developed by the Contented Dementia Trust from Dementia Care Mapping principles with the validation and support of the late Professor Tom Kitwood.
  5. Journal of Dementia Care Volume 26, no. 6. Pp 30-33.
  6. http://www.contenteddementiatrust.org/about-us/our-research/
  7. Oliver James, 2008
  8. https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/specialised-early-care-alzheimers-specal
  9. http://www.contenteddementiatrust.org/specal-method/our-literature-2/
  10. http://www.contenteddementiatrust.org/specal-method/our-literature-2/
  11. http://www.contenteddementiatrust.org/what-people-say-about-us/