Response to the Alzheimer's Society criticisms of SPECAL

RESPONSE TO CRITICISMS OF THE SPECAL METHOD

Many organizations and individuals have contacted us asking about the negative statements about SPECAL which have been posted on the UK Alzheimer’s Society website and articulated in one or two reviews of the book ‘Contented Dementia’.  SPECAL’s overall response is that these criticisms take no account of the SPECAL Photograph Album understanding of the experience of dementia as understood from the perspective of the person with dementia and are therefore based on the carer’s reality which simply does not work for dementia.  Below SPECAL outlines its responses to the criticisms raised.

• “SPECAL is contrary to the principles of the Mental Capacity Act”

SPECAL’s detractors have argued that in (allegedly) removing choice and control, SPECAL is contrary to the UK Mental Capacity Act.  SPECAL does not consider that its method removes choice and/or control.  SPECAL believes that it achieves the exact opposite by enabling people with dementia to regain and retain agency and preference. It does so by supporting the reality of the person with dementia and using their language as a starting point, rather than imposing the carer’s reality on the person with dementia. The SPECAL method of communication is totally person-centred, led by the person with dementia.  This empowers them to have a greater understanding and control of their day to day life.

SPECAL’s method of help and support in relation to the communication of information is completely aligned both with the UK Mental Capacity Act and with the Nuffield Foundation Report on Dementia and Ethics. 

Further to the above, SPECAL is informed by the fundamental concept that feelings are more significant than facts for a person with dementia-related memory loss.  This concept is supported by the recent findings of Feinstein et al(1) 

• “SPECAL suggests in its methodology that lying to patients is acceptable”

SPECAL does not promote and has never taught any such methodology.  As is explained in detail in the published(2) account of the SPECAL method, ‘Contented Dementia’ by Oliver James, carers of people with a clinically diagnosed, progressive, irreversible dementia are taught techniques which support the reality of the person with dementia. 

SPECAL takes the view that people with dementia frequently draw on old factual memories in order to make sense of the present, to compensate for their disability which is, quite simply, a lack of recent factual memories.  This is a rational and self-enabling mechanism that people with dementia choose to deploy, and has been closely observed by SPECAL at Burford over the past 20 years. Forcing the person with dementia to abandon their own chosen strategy in favour of a reality that they do not understand is, in our view, entirely unacceptable.  SPECAL is completely in agreement with the finding of The Nuffield Foundation Report on Dementia and Ethics, published in October 2009:

‘Telling the truth is clearly an important moral value, and telling the truth will always be the natural starting point. However, in circumstances where significant distress or anger is caused by verbally truthful answers to questions, because of the person’s cognitive problems, then it may be more humane to find responses that evade or offer only a partial answer to the person’s question, in order to minimise distress.’

When we remind the person with dementia that they are incorrect we are conflicting with their reality, causing them to question themselves and diminishing their confidence, which contributes greatly to the onset of depression and further triggers the already present cognitive decline. By lowering the person’s confidence we undermine their ability to make use of the factual memories they still own and, with confidence, can access.  SPECAL seeks to support the patient with the ultimate goal of maximising enablement and at the same time sustaining their quality of life.

There is a profound difference between this and “lying” and SPECAL rejects this purposefully emotive allegation. 

• ”SPECAL states you should avoid asking questions”

There are, of course, many ways of finding out information without asking direct questions.  What SPECAL aims to do is to ensure that we promote a sense of self, and avoid reducing the sense of personal worth, agency, social ease, and trust that all will be well. This is a fundamental principle of person-centred care, applicable to every human being and of crucial importance to those with a diagnosis of dementia. 

Asking questions puts a person with dementia under huge strain, causing them to search for recent factual information that they may not have.  When a person with dementia continues to be questioned their well-being diminishes under the strain, and depression sets in to introduce further, unnecessary cognitive decline.  The needs and wishes of a person with dementia can be explored and understood far more successfully by employing the SPECAL method than they ever can be by direct questioning and contradiction.

There is a wealth of positive evidence that proves this, and this evidence is growing every day.  Longitudinal studies are now needed in order to show this scientifically. Individual cases can be witnessed and case histories studied at Burford; everyone is encouraged to attend and observe and discover the results of the past 20 years.  

In essence, once you understand the limited recent information that people with dementia have access to, then you can more easily understand that their ability to answer questions is diminishing. It is distressing for the person with dementia to be asked questions which effectively force them to confront, unnecessarily, their own disability. It is imperative that we remember that the person with dementia does not lose their reason, or their feelings. They only lose their access to recent factual information.  Asking a direct question is an ineffective method of accessing information if you want to avoid imposing additional stress on an already stressed human being who is grappling with the impact of dementia.

• “SPECAL lacks rigorous research evidence”

The Royal College of Nursing conducted a three month evaluation of SPECAL in 1999.  The study results are published in Aging and Mental Health Journal E.J Pritchard and J.Dewing(3).

The SPECAL Photograph Album analogy’s fundamental concept is fully consistent with the research evidence found in Feinstein’s(1) work with amnesic patients.

SPECAL in its history has accumulated a wealth of case studies and will soon be publishing the results of a recent survey of SPECAL users.

SPECAL is embarking on various research projects and SPECAL emphasises its acknowledgement of the need for rigorous longitudinal research; we are very open to anyone wishing to embark on this with us and would welcome collaboration.

(1)Feinstein, J.S. Sustained experience of emotion after loss of memory in patients with amnesia, PNAS, 2010,1 – 6.

(2)‘Contented Dementia’ by OLIVER JAMES, ISBN 978009/190/8/3, VERMILION 2008

(3)Pritchard, E. J. and Dewing, J. (2001) A multi-method evaluation of an independent dementia care service and its approach. Aging & Mental Health, 5 (1): 63-72