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“Activating” dementia

I remember telling one certain person in May 2014 that she was about to become ‘activated’ as a person with dementia. She nearly jumped a foot in the air.

The context of this remark was an article which appeared in the Telegraph


which revealed


Language matters.

When I was compiling lists of patients for the post take ward round as a junior doctor in Cambridge, you’d frequently see patients described as “acopia” (meaning, of sorts, “can’t cope”) or “social admission”). When patients nowadays here of themselves becoming ‘activated’, they sound invariably quite amused, if not consequently quite miffed.

Prof David Oliver recently noted.

But this is of course classic creation of a new market to create profit. Self management has become such an ‘important issue’ nationally, even ahead of the severe funding crisis in the NHS, that even Buzzfeed News covered it a few days ago.

“Hundreds of health and medical apps abound on Apple’s App Store, but for
consumers, there’s no easy way to tell which ones are effective and tested — and which ones are useless, or even harmful. Medical experts and regulators have questioned apps that claim to calculate insulin dosages for diabetics, diagnose melanoma risk, measure blood pressure, care for patients with schizophrenia, and offer reproductive health advice but don’t mention contraception.”

Sadly, many fads presented as a boost to healthcare particularly from current NHS innovation gurus are there for a ‘fast buck’.

Rebecca Robbins gives a very raw example in the Scientific American:

“The brain-training giant Lumosity is recalibrating its strategy and facing new challenges as it reels from a federal crackdown on bold health claims about its digital games.

The company behind the Lumosity brand, Lumos Labs, has dramatically cut back on TV advertising. It is facing sharp questions about its much-touted research, which found that users enjoyed a bump in IQ. And there are signs that the growth of Lumosity’s once impressive mobile app business may have stalled.

Meanwhile, the Federal Trade Commission is preparing to send out rebates to thousands of customers who may have been drawn to Lumosity by its misleading ads. The agency has verified 13,000 requests for refunds, which will be funded by $2 million from Lumosity, but has yet to disclose how much each customer will receive.”

We are not all the ‘perfect consumer’. To exert perfect choice we need perfect information, and not even the very best of us are rational 100% of the time. Some of us, with or without dementia, can make appalling decisions, even with full legal mental capacity.

Recently – I asked a NHS patient what he happened to think of self management apps.

He answered “pretty useless, Shibs”

He further explained that his most direct experience of them was in the measurement of blood glucose, and said that ‘accessibility’ was still inadequately thought about by developers. Some people living with diabetes have eyesight problems, common causes being cataracts and retinal disease, so one would have thought that visual inclusivity would have been a factor to bear in mind, if you cared about widespread adoption of innovation.

Patient activation is thought to capture a number of core components of patient involvement, each of which is important for active engagement and participation. It is defined as ‘an individual’s knowledge, skill, and confidence for managing their health and health care’ (Hibbard et al 2005).

The basic concept is:

Patients with high levels of activation understand their role in the care process and feel capable of fulfilling that role. Individuals with long-term conditions who are more highly activated are more likely to engage in positive health behaviours and to manage their health conditions more effectively.” (p. 7; Hubbard and Gilburt, 2014).

I don’t like the word ‘activation’ as it sounds like pressing a button.

At worst, the term itself implies that patients can be very lazy, whereas my experience is that the vast majority of people like me living with various long term conditions is that not a moment goes by without that condition being ’thought about’.

I feel parity of esteem, a longstanding aspiration in health policy meaning that mental health is meant to be of inferior priority to physical health, demands that we should be in principle be keen to develop ways of implementing patient activation for people with mental health needs, as well as say people needing ‘treatments’ for physical illness.

At the risk of NIMBYism, I am always worried that the army of a million or so people living with dementia get ‘left behind’ in such policy approaches.

I believe somewhat that part of the reason for this is due to stigma and discrimination, which can envelope dementia, and which still persists despite multi-million pound blockbuster efforts such as ‘Dementia Friends’.

Take for example this discussion of the use of ‘patient activation’ in a Hispanic population.

“Labeling a patient as having a psychiatric condition can result in providers’ questioning and doubting whether the patient’s complaints are due to a medical condition or are part of his or her psychiatric disorder, a phenomenon known as diagnostic overshadowing.”

(p.734; Cabassa et al., 2014)

Part of the major problem in developing innovations in dementia has been the obsession with ‘monotherapy’ in the medical model. But we know people rarely take drugs on prescription in isolation. The swathe of literature on patient activation generally seems to make short shrift of the idea of polypharmacy, or any social inequalities in compliance (e.g. living conditions).

In dementia, cognitive problems might prevent adequate use of ’activation’, say if you’ve got problems in learning and memory from the dementia of Alzheimer type.

But it doesn’t stop there. Say you’re in terms of behaviour particularly risk-seeking or impulsive, a feature of some with the behavioural variant of frontotemporal dementia.

Or say you happen to have some variant of Alzheimer’s disease where you are quite apathetic (this is now, for rather political correct reasons, being re-framed as ‘motivationally challenged’).

In a way, we’ve been here before. The same burning desire to implement personal choice and control, independent living, ran roughshod over such concerns with personal budgets in dementia. I dare say we will revisit this shortly with integrated personal commissioning for joint health and care budgets in dementia.

For some people, there should be a safeguarding component engaged by the Care Act, arguably

One can see though a parallel for dementia, however.

There is no doubt that this is a well intentioned approach.

Take for example this comment on the need for ‘patient activation’ for people with chronic schizophrenia.

“Recommendations for improving the quality of physical and mental health services suggest changing from more paternalistic models of care to those that are person-centered and person-directed … Clinically useful activation measures to assess individual differences in ‘activation’ (requisite knowledge, skill, confidence, beliefs for managing personal health and care) are important in tailoring care and intervening when care needs change—e.g., a less-activated patient may need additional information and encouragement compared to one more activated.” (Green et al., 2010; p.327).

When I was doing postgrad exams for medicine in 2004, you always had to introduce yourself to the patient in the communication skills mock-up. More than a decade later, this got re-invented as #hellomynameis. Likewise, the actual thrust of patient activation is nothing new. We as junior physicians always had to ask about the beliefs, concerns and expectations of patients, especially when starting a new drug. We saw this yesterday in the mainstream media when the case for/against statin drugs for lowering cholesterol re-exploded onto the mainstream media.

“Key factors associated with patient activation in schizophrenia may differ from those found in persons with physical illness. For instance, cognitive deficits and serious psychiatric symptoms in schizophrenia (e.g., negative symptoms) may interfere with the consumer taking an active role in illness management, altering the relationship between activation and health outcomes. In addition, psychiatrists report being less likely to involve consumers” (Kugler, Salyers and Lysaker, 2013; p. 339).

People living with dementia should be afforded dignity and respect, like every other human being. This is sadly not always true. But sadly it is not always true in the NHS and social care institutions (though, equally, lots of outstanding care exists.) If we are to progress safely and in a timely way from hospital-based care and support to one based in people’s own homes, it’s essential we iron out any inequity and unfairness in the system, especially for some who might be considered ‘vulnerable’. Whilst such approaches are often sold on the basis of being a ‘cost saving’, a false economy for those people who happen to be vulnerable will emerge, and this I feel is in no-one’s benefit.


Cabassa LJ, Gomes AP, Meyreles Q, Capitelli L, Younge R, Dragatsi D, Alvarez J, Nicasio A, Druss B, Lewis-Fernández R. Primary health care experiences of hispanics with serious mental illness: a mixed-methods study. Adm Policy Ment Health. 2014 Nov;41(6):724-36. doi: 10.1007/s10488-013-0524-2.

Green CA, Perrin NA, Polen MR, Leo MC, Hibbard JH, Tusler M. Development of the Patient Activation Measure for mental health. Adm Policy Ment Health. 2010 Jul;37(4):327-33. doi: 10.1007/s10488-009-0239-6. Epub 2009 Aug 29.

Hibbard JH, Mahoney ER, Stockard J, Tusler M (2005). ‘Development and testing of a short form of the Patient Activation Measure’. Health Services Research, vol 40, no 6, part 1, pp 1918–30.

Hubbard, J, Gilbert, H. (2014) Supporting people to manage their health. An introduction to patient activation, London: King’s Fund.

Kukla M, Salyers MP, Lysaker PH. Levels of patient activation among adults with schizophrenia: associations with hope, symptoms, medication adherence, and recovery attitudes. J Nerv Ment Dis. 2013 Apr;201(4):339-44. doi: 10.1097/NMD.0b013e318288e253.

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