'Contented dementia?' Not for all, not all the time.

Opinion about a book suggesting ‘A Revolutionary New Way of Treating Dementia: 24-hour Wraparound Care for Lifelong Well-being.'

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

---

I was initially excited to read ‘Contented Dementia’ because it was recommended by a couple of people in different Carer Forums: ‘Contented Dementia¹: A Revolutionary New Way of Treating Dementia: 24-hour Wraparound Care for Lifelong Well-being (Published August 6, 2009) by Oliver James

I found myself in a small rabbit hole while reading this book, trying to assess whether its “revolutionary new way”, the proposed SPECAL Method (Specialised Early Care for Alzheimer's), was worth recommending to you.

I was hopeful and primed to like it because of the recommendations, and then something didn’t feel quite right to me…I’ve spent some time researching and trying to understand why it makes me uncomfortable.

At first, I felt that it could enable a stronger, easier connection and make caregiving more manageable. Then I wondered how much time is needed to facilitate this approach.

I became uncomfortable with the burden and expectations this places on caregivers, when ‘care’ is only a fraction of what most caregivers do. So I did a little research.

Several carers have experienced positive improvements in caring for a loved one when using this method. Some of them said this decreased over time, with the disease progression. Others have said it eased communications when the person with Dementia was very agitated.

Caring for anyone with dementia changes over time, and in my experience, it’s highly individualistic; it depends on your relationship with the person you care for, the stage of cognitive decline and the type of dementia they have.

This book is part memoir of Penelope Garner’s experiences. It also advocates for a care approach for Dementia sufferers, based on her experience. It seems like a straightforward approach. (I haven’t been trained on the method, and I don’t know the specifics.) However, from the book, I think it oversimplifies a complex and unpredictable situation that changes over time.

It’s sparked controversy within the dementia care community. The debate centres on striking a balance between ensuring a person's comfort and safety and respecting their autonomy and right to make choices, even if those choices are based on a different reality than the one perceived by others.

The three principles of the SPECAL (Specialised Early Care for Alzheimer's) Method are based upon the assumption that dementia patients can no longer store new information efficiently:

• Don’t ask questions.

• Learn from them as the experts on their disability.

• Always agree with everything they say, never interrupting them.

The method tries to use older memories as reference points,

“If Penny’s techniques are employed, they do not lose track completely of present-day reality as experienced by the rest of us. It is possible to help them to connect their historically based way of perceiving situations with the necessary tasks of everyday living, like eating, going to the loo and sleeping. In a phrase, Penny’s method ‘makes a present of the past’.

Finally, it outlines how these reference points and the method can be used when the person moves to a nursing home “to be with their peers”

At this stage, it is in their best interests to be with their peers, so long as they are assisted by informed carers working on a rota system. Thankfully, it is eminently feasible to transfer the SPECAL package developed at home to the nursing home, making the job of the staff much easier.

I wonder how much time care workers would have to dedicate to each person to implement this Method.

The Alzheimer's Society has expressed concerns about the SPECAL method, particularly regarding its alignment with the Mental Capacity Act 2005 (UK), which emphasises respecting the individual's capacity to make decisions and be involved in their care.

Advocates and comments by Caregivers:

• The Good Care Group

• Comments on The Alzheimer Society Dementia Forum

Contradiction to person-centred care: Critics argue that the SPECAL approach, particularly the suggestion to "always agree with everything they say" and "never ask questions", could be seen as conflicting with the principles of person-centred care, which emphasises recognising and respecting the individual's personhood and unique needs.

But I can imagine situations where the approach could be a welcome relief to both carer and patient. The issue may be that it is not always applicable, which makes it feel reductive. Not for all, not all the time. Great in theory, but time and labour intensive, with variable results? Perhaps it’s too subjective…it depends on when… You can see I’m not convinced.

“Contented Dementia” rests on the premise that every situation can be ‘content’, ignoring the behaviour and personality changes that occur with a deterioration of the pre-frontal cortex, for example, lack of impulse control (a typical Alzheimer’s symptom). In addition, Dementia isn’t one disease; there are subtypes with differing symptoms.

Halfway through the book, I felt it was a rose-tinted, hero-journeying narrative - an ideal or overly optimistic prescribed approach. For any family caregiver who is exhausted, trying to work and care for a loved one with dementia who has behavioural issues, it seems unrealistic.

Every memoir and experience holds valuable reflections and thoughts. However, trying to advocate a one-size-fits-all method seems a stretch.

Perhaps, the most concerning for me was how easily a caregiver could read this, and exacerbate their existing guilt through ‘not effectively’ enabling the ‘contentment.’

Taken from a comment online: The book essentially counsels caregivers to totally subsume their own emotions and needs and immerse themselves in a world of make- believe, devoting all their attention to the patient. One example struck me as particularly absurd - the patient was a woman who was a champion bridge player prior to her illness - and the “solution” to her agitation and anxiety was for her caregivers to to host daily, fake bridge games involving props and multiple people play-acting the roles of bridge players. Seriously? How is that remotely practical for a family member with sole caregiving responsibilities, trying to juggle work and their own family commitments?

The SPECAL method has not been peer reviewed as a clinical approach, and I’ve not seen a meta-analysis. However, it has been recommended in a few carer forums. (Additional reference²)

It would be helpful if there were more evidence of the clinical benefits for the patient and the caregiver. A real-world evidence-based study of caregiver benefits?

I’d be interested to hear your thoughts and opinions if you’re a caregiver who’s read this book.

An alternative perspective.

Is this method trying to perpetuate a delusion that we can enable someone to be content all the time? Like trying to be happy all the time?

In my opinion, it’s futile to expect we can enable loved ones with Dementia to be ‘content’ all the time. I also think that it’s a dangerous expectation to place on a caregiver.

Caregiving is a rollercoaster of seismic peaks and troughs, made even more seismic by Dementia. If you’re on your own, you need all the tips and support you can get to help you navigate forward.

Here are some tips and ideas from numerous experienced caregivers. These feel more aligned with my personal experience: 'How to connect and communicate more effectively.' #1 Connection over correction. Amplifying the work of Dementia Action Alliance, Pat Snyder and Lynette Wilson. After watching their YouTube video, I realised I needed to condense its content for our community. It’s full of practical tips and ideas that can help anyone who interacts with people who have dementia.

This article offers several books to support you and your caregiving:

Carer Mentor's Top Ten 'Annual Re-Reads'

Nothing is simple, straightforward or clear-cut with Dementia.

We seek helpful information and support wherever we can.

I think my discomfort with the ‘Contented Dementia’ book, is that if I’d known all this information when we were caring for Dad I may have tried the method. I know we were already overwhelmed, AND sometimes we had to counter Dad’s wishes for his safety.

I don’t presume to know your situation, dear reader. Perhaps you’ve discovered great success with this Method. I just want us to be wary of advice/recommendations/methods. What may work for one person may not work for another.

Whether it’s the SPECAL Method or the Dementia Action Alliance advice, I hope something offers you more support.

Please press your heart ‘❤️’ to like this and guide others here.

Warm wishes to you and your loved ones.

1. ‘Contented Dementia: A Revolutionary New Way of Treating Dementia : 24-hour Wraparound Care for Lifelong Well-being (Published August 6, 2009) By Oliver James

Dementia is a little understood and currently incurable illness, but much can be done to maximise the quality of life for people with the condition. Contented Dementia - by clinical psychologist and bestselling author Oliver James - outlines a groundbreaking and practical method for managing dementia that will allow both sufferer and carer to maintain the highest possible quality of life, throughout every stage of the illness.A person with dementia will experience random and increasingly frequent memory blanks relating to recent events. Feelings, however, remain intact, as do memories of past events and both can be used in a special way to substitute for more recent information that has been lost. The SPECAL method (Specialized Early Care for Alzheimer's) outlined in this book works by creating links between past memories and the routine activities of daily life in the present. Drawing on real-life examples and user-friendly tried-and-tested methods, Contented Dementia provides essential information and guidance for carers, relatives and professionals.

Penelope Garner (Penny), was inspired by the Dementia care her mother Dorothy received. The experience taught her fundamental skills which she further developed while working with elderly patients at Burford's community hospital as an Alzheimer's Society helper. Through careful observation, she created a unique care approach.

Evaluating the SPECAL approach to care May 2015 Journal of Dementia Care 23(3):24-2

2.