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If the drugs don’t always work, why don’t we consider more seriously cognitive stimulation therapy?

Shibley Rahman 0 Comments

dementia CST

The transfer of an individual living with dementia into a residential setting, at worst, can be associated with an sensorily-unstimulating environment, as well as reduced sensorimotor and cognitive stimulation, social interactions, and physical activity.

Starting from the 1960s, various non-pharmacological treatments for patients with dementia have been proposed, in order to improve cognitive skills and quality of life, to reduce behavioural disturbances and maximise function in the context of existing deficits.

There is a long tradition of psychological therapies for people with dementia, but they had seldomly been rigorously evaluated, making it difficult for commissioners and providers to plan services from a solid evidence base, and also making it difficult to draw comparisons with pharmacological interventions. However, Cochrane reviews on non-pharmacological interventions have previously highlighted the insufficiency of the available evidence.

A recent Cochrane review on cognitive stimulation (Woods et al., 2009) combined the data from nine randomised controlled trials. It found that, oer and above any medication effects, and some studies suggest that the benefits may be maintained for over a year. Recently, Apóstolo and colleagues (2014) reported that cognitive stimulation therapy had significantly improved cognition, explaining the 15.7% variability, but there was no statistical evidence of its effectiveness on depressive symptoms. This improvement was not affected by the baseline level of dependence-independence in activities of daily living.

Conceptualising dementia within the framework of a disability model highlights the distinction between the underlying impairment, resulting from pathological changes, and the resulting limitations on engaging in activity (disability) and restrictions on social participation (handicap).

Cognitive impairment is a defining feature of dementia caused by neurodegenerative conditions including the dementias. Family caregivers are also affected because of the practical impact of cognitive problems on everyday life and the strain and frustration that often result. It has been suggested that rehabilitation provides a useful overarching conceptual framework for the care and support of people with dementia and for the design of interventions to meet their needs. Recreational activities (e.g., crafts, pets) and art therapies (e.g., music, dance, art) have been often proposed as non-pharmacological treatments in dementia, and are widely utilised in residential settings.

Cognition-focused interventions as a group fall under the broader umbrella of non-pharmacological interventions. Cognition-focused interventions can be broadly defined as interventions that directly or indirectly target cognitive functioning as opposed to interventions that focus primarily on all aspects of whole person care – i.e. behavioural, emotional or physical function.

An increasing number of dementia studies describe their intervention as ‘cognitive stimulation’. Clare and Woods (2008) provided a definition which stated that cognitive stimulation:

  • targets cognitive and/or social function;
  • has a social element — usually in a group or with a family care-giver;
  • includes cognitive activities which do not primarily consist of practice on specific cognitive modalities;
  • may be described as reality orientation sessions or classes.

Several types of cognition-based interventions have been described. The potential benefits of non-specific stimulation of cognitive functioning for people with dementia have long been recognised. These interventions typically involve engaging the person with dementia in a range of general activities and discussions, are commonly conducted in groups and are aimed at general enhancement of cognitive and social functioning.

Cognitive stimulation typically involves a set of tasks designed to reflect cognitive functions such as attention, memory, language, and problem solving, combined with a reality orientation session. This training takes place in individual or group sessions with a range of difficulty levels. The fundamental assumption is that practice with specific cognitive function tasks may improve, or at least maintain, functioning in a given domain and that any effects of practice will generalise and induce a general improvement of cognitive and social functioning. There is some additional evidence that these interventions can decrease behavioural problems and improve mood.  Other authors have also reported positive results for training of basic activities of daily living.

However, some treatment guidelines have been highly critical of cognitive stimulation or training interventions in dementia in view of the risk that cognitive gains may be achieved at the expense of reduced wellbeing and adverse effects.

So, the burning question is: if the drugs don’t always work, why don’t we consider more seriously cognitive stimulation therapy? The answer is possibly in large part cultural and social. That is, medical professionals, large charities and the media, in cahoots in Big Pharma, don’t want to give up their traditional power base in treatment. Look for example at Julianne Moore on the red carpet of the Oscars last night talking about how ‘there is no treatment for dementia’. But almost certainly we don’t have that the correct organisational structures in place. There is regulatory capture, which means that drugs can rarely become recommended despite modest effects, but there is virtually no head to head comparison of the cost efficacy or resource allocation consequences of medication vs psychosocial approaches. There is no clear infrastructure subserving ‘social prescribing’, where GPs can easily prescribe such treatments, yet, in England, despite the fact that this could potentially save the NHS a lot of money, and see an improvement in wellbeing in many of its patients.

There are powerful forces at work. You have been warned.

 

References

Apóstolo JL, Cardoso DF, Rosa AI, Paúl C. The effect of cognitive stimulation on nursing home elders: a randomized controlled trial. J Nurs Scholarsh. 2014 May;46(3):157-66. doi: 10.1111/jnu.12072. Epub 2014 Mar 5.

Clare L, Woods RT. 2004. Cognitive training and cognitive rehabilitation for people with early stage Alzheimer’s disease: a review. Neuropsychol Rehabil 14: 385–401.

Woods B, Spector A, Orrell M, Aguirre E. 2009. Cognitive stimulation for people with dementia (review) The Cochrane Database of Systematic Reviews Chichester: Wiley

Life story: an essential tool in living better with dementia

Shibley Rahman 0 Comments

story

A life story is the essence of what has happened to a person. “Life story work” is not just about gathering information about a person’s life. It can cover the time from birth to the present or before and beyond. It includes the important events, experiences, and feelings of a lifetime. It can be a very helpful tool for dementia care.

Someone’s life story describes a human process uniquely lived by an individual. It directs the individual’s way of looking upon her self or himself and is, therefore, an important component in a person’s identity. To have a feeling of personal value, it is essential that the individual is seen. Life story work can be helpful in understanding more about the person’s interests and preferences. Listening to someone else’s story is a powerful way of bestowing value on that person. From birth to death, people live through many struggles, joys, relationships, triumphs, and disappointments that structure the meanings assigned to their lives.

Things which might be included are:

  • factfiles: lists of likes and dislikes/preferences, mother’s name, primary school
  • personal accounts: stories about first day at school, a holiday, what life was like in X during a certain period of time. photographs, family trees.

A person living with dementia is just that: a person first and living. Often for the person living with dementia, their main interaction with others is focused on personal care tasks. Whilst these are essential, a person is more than a group of tasks and should not only be defined by what they need.

Despite the progressive nature of dementia, persons with dementia show they still have the ability to recall past memories and to experience improvements in their perceived wellbeing. This provides an opportunity for care staff and other professionals to use life review and life story book as a part of care activity to improve and maintain the wellbeing, cognitive function and mood of individuals with dementia as long as possible. The emphasis on individual’s life stories and experiences appears to help staff to get to know residents better, and offers the potential for more individualised, person-centred care which recognises the importance of the person’s biography.

According to Linde (1993), there are two criteria to be fulfilled in a life story. First, a life story should include some evaluative points, which communicate moral values of the narrator. Secondly, events included in a life story should have a special meaning and be of such significance to the narrator that it can be told and retold throughout life. The use of biographical and life story work has a long history in dementia care, although the opportunities for people with dementia to express themselves by telling their story may be limited.

But life story work is not just about gathering information about a person’s life. What is important is the way in which the life story information is gathered. The challenge is to ensure each person lives well. This can be achieved by really getting to know the person through the development of a life story and focusing on the person’s abilities now, what they were and what they are interested in.

There is evidence to support the view that life story work can improve the relationship, whether family or professional, between the person with dementia and their carer(s). Persons are likely to describe life story work as an enjoyable activity. However, it is not just the activity that makes the event enjoyable, it is the forging of companionship that accompanies the sharing of the book which matter too. Benefits reported usually include enhanced well-being; improvements in mood and some components of cognitive function; and reductions in disorientation and anxiety and improvements in self-esteem, memory and social interaction.

In his seminal book “Dementia reconsidered: the person comes first”, Kitwood (1997) recognised these threats to the personhood of people with dementia and stated that biographical knowledge about a person “becomes essential if that identity is still to be held in place” (p. 56).

Kitwood (1997) suggested that one way of holding identity in place is through the conduct, production and use of a life story. Kitwood here defined personhood as ‘a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust.’

Other useful discussions of personhood are found on the Alzheimer Europe website.

Life story work offers a chance for family carers to illustrate the personhood of their relative; and allows care staff to get a sense of the person behind the dementia and make links between the person’s past and the present, so helping them respond more sensitively to need. Kitwood (1997) developed a framework of person-centred care that acknowledged the person with dementia’s sense of self, supporting care staff to act in ways that promoted a person’s sense of identity, autonomy and agency.

There is much debate in the literature as to what extent the self persists or diminishes in people with dementia. Some researchers contend that the self remains intact throughout the course of dementia. The common failure to recognise the individual’s continuing awareness of self can lead to low expectations for therapeutic intervention, to interactions that are limited to the task at hand (such as activities of daily living) and, therefore, to less than optimal experiences for a given level of dementia.

When a family member gradually loses the ability to tell or remember his/her life story, close family members often support the patient by taking over the storytelling or adding details to the story. Previous research has shown that this type of collaborative storytelling can be a deeply moral activity for the patient and his/ her close relative(s) in that there is a strong commitment to supporting the patient’s identity through the storytelling. Spiritual reminiscence, a type of narrative gerontology, has an important place in individual and community experiences of ageing. It is a way of telling a life story with an emphasis on what gives meaning to life, what has given joy or brought sadness. The process of spiritual reminiscence can identify issues of anger, guilt, or regret.

A number of challenges can potentially present when using life story work with people with dementia. Private and personal stories might, perhaps, sometimes divulged during the life story work process. Also it might also be possible to have a life story book that is rushed, contains errors or is of poor quality somehow detracts from the person and their life. There is a need for a final quality checking process that includes the person with dementia and family members before life story books are completed. But life history information can be recorded in a range of different ways including life storybooks, leaflets, collages, memory boxes and/or electronic formats.

 

References
Kitwood, T. Dementia Reconsidered: The Person Comes First. Open University; Buckingham: 1997.

Linde C. (1993) Life Stories: The Creation of Coherence. Oxford University Press, New York.

Why have people living well with dementia become “the squeezed middle”?

Shibley Rahman 0 Comments

There’s been a huge amount of discussion as to who the real victims of the great international economic crash, caused by investment bankers, are.

One term which has been used has been “the squeezed middle“.

Irrespective of who exactly constitutes “the middle”, there is some general disquiet that the word “squeezed” perhaps is not necessary the most appropriate adjective. “Squeezed”, as others have suggested, moots ‘a mild discomfort’ rather than something which should cause much concern.

Likewise, both domestic and international policy in the dementias, I feel, suffer from this “squeezed middle” phenomenon. Here, the people with dementia themselves, and friends and family, become squeezed.

Paid carers often have an unpleasant settlement, in having to deliver care in fifteen minute slots, little job security sold in the name of ‘flexibility’ through zero hour contracts, no reimbursed expenses for travelling time, and sometimes breach of the national minimum wage.

Since the launch of G7dementia and the Prime Minister Dementia Challenge, arguably a form of ‘glocal’ marketing, there has been much interest as to who has been calling the shots.

We cannot go on like this.

When people speak of ‘not losing the momentum’ from the Prime Minister’s Dementia Challenge, there is often completely inadequate analysis to accompany.

We do not know as yet how much ‘communication’ has turned into ‘action’ with Dementia Friends, though achieving 900 000 “Dementia Friends” has arguably been an achievement. As a “Dementia Friend Champion”, I feel honoured to have been part of this social movement.

But policy runs the risk of overplaying its hand in discussion of prevention and risk factors. It’s thought that non-modifiable risk factors comprise quite a significant proportion of people with dementia.

At the other end of policy, we have the unseemly spectacle of ‘thought leaders’, some of which with unclear conflicts of interest, suggesting reduction of antipsychotic prescriptions in dementia, when they were the very ‘experts’ who were promoting the antipsychotics in the first place.

The idea that people with dementia, once they have received a robust diagnosis, can live well jars with a reality where people with dementia are left languishing without any involvement from health or care services in England.

When I first mooted the idea of ‘living well with dementia’, it was accompanied by quite significant apathy from clinical professionals.

The full details of my first book, “Living well with dementia: the importance of the person and the environment”, are here.

I have mostly seen discussion of ‘living well with dementia’ reduced to sloganeering and trite soundbites, when a change in culture was necessary.

This nearly excited coincided with ‘change agents’, ‘boat rocking’ and so on, accompanied by a “feel the lurrrrve” style of social media campaigning, which excluded the very people who needed to be involved.

A glowing example of failure of inclusion has been the tardiness with which a person living with dementia was opted onto the World Dementia Council; and even there, in the end, the person was not elected, and parachuted in through what appears to have been decision-by-CEO-emails.

So, in between the drive to prevention and risk factors, which no doubt includes health clubs in the private sector, looking forward in a view of five years or so, and a drive to keep drugs in the spotlight in later stages, there are the “squeezed middle”.

In reviewing the effects of the Prime Minister’s Dementia Challenge, it would be great also to look at parts of policy which really have not worked well, like the slashing of legal aid and problems in equity for advocacy.

The talk of improving the wellbeing of caregivers continues, but talk is cheap. You have to put your money where your mouth is.

Why is it claimed that 9 out of 10 care homes fail patients living with dementia, even after the Prime Minister’s Dementia Challenge?

I’d be the first to be delighted if there were a cure discovered for any of the hundred or so dementias. But we need a bit of the sunshine disinfectant Jeremy Hunt is so keen to share.

It has recently been reported that:

“Scientific and financial challenges have meant that, between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease, it said.”

The whole world waits with baited breath as to what the forthcoming ADI and WHO meetings in Geneva will present.

But I suggest you don’t get your hopes up with the convincing rhetoric.

Book launches by Kate Swaffer and Shibley Rahman in Camden in June 2015

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Kate and I are making available a limited number of tickets for our joint event, to celebrate publication of our books on dementia later this year. This event is mainly by invite-only. If, however, you wish to be considered for one of these other tickets, we’d be delighted to meet you. Details of the event are here.   We provisionally intend to hold this event on Saturday 27th June 2015 between 12 pm and 6 pm at the Arlington Centre, Camden.     1. Kate Swaffer (@KateSwaffer) and Dr Shibley Rahman (@legalaware) intend to do a joint book launch later this year. Both books are being published by Jessica Kingsley Publishers later this year. Kate’s book is called, “What the hell happened to my brain?” Details are here. Information about this book:

“Kate Swaffer was 49 years old when she was diagnosed with a rare form of young onset dementia. Here, she insightfully explores issues relating to that experience, such as giving up employment and driving, breaking the news to family, having a suddenly reduced social circle, stigma surrounding dementia and inadequacies in care and support. Kate also shares her experiences in dementia activism and advocacy, highlighting the important role of social media in combatting isolation post-diagnosis. Kate’s empowering words will challenge preconceptions on dementia, highlight the issues that impact individuals living with a dementia diagnosis, and act as a source of comfort for them and their loved ones. The book will also be of interest to dementia care professionals.”

2. Shibley’s book is called “Living better with dementia: looking forward to the future”, as a follow-up to his irst book “Living well with the dementia: the importance of the person and the environment” which was received with critical acclaim. Details are here. Information about this book:

“What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields.”

Kate and Shibley have decided to make a limited number of tickets for this free event for this book launch available to all, but the event is generally by invitation only. If you’d like you to be considered for one of these limited number of tickets, please do let us know. Dr Shibley Rahman @legalaware

Sophisticated brain imaging and changes in eating behaviours in dementias

Shibley Rahman 0 Comments

Food is a relatively undeveloped research subject in health and social welfare, particularly with respect to older people (Mennell et al. 1992), but some inroads have been made into understanding the specific neural substrates underlying abnormal eating behaviours for persons living with dementia.

It is probably fair to say that the dementia syndromes in which eating behaviours have been investigated the most include the dementia of Alzheimer type (at first signposted by problems in attention and new learning and memory, “DAT”), the behavioural variant frontotemporal dementia (at first signposted by problems in personality and behaviour, “bvFTD”), and temporal variants frontotemporal dementia (including problems in semantic knowledge, semantic dementia or “SD”).

First of all, it is important to appreciate that eating abnormalities are more likely in certain types of dementia more than others. For example, the frequencies of symptoms in all five domains, except swallowing problems, might be higher in the behavioural variant of frontotemporal dementia than in DAT (Ikeda et al., 2002); conversely, changes in food preference and eating habits were greater in SD than in DAT.

In semantic dementia, these authors found that the developmental pattern was very clear: a change in food preference developed initially, followed by appetite increase and altered eating habits, other oral behaviours, and finally swallowing problems. In bvFTD, the first symptom was altered eating habits or appetite increase. In Alzheimer’s disease, the pattern was not clear although swallowing problems developed in relatively early stages

Understanding which parts of the brain go wrong in producing these symptoms has turned out to be productive. Turning to the neuroanatomical implications of their findings, Ikeda and colleagues (Ikeda et al., 2002) have proposed that the changes in eating behaviours reflect the involvement of a common network in both variants of frontotemporal dementia—namely, the ventral (orbitobasal) frontal lobe, the temporal pole, and the amygdala (e.g. Cummings and Duchen, 1981).

The ventromedial frontal lobe is affected from an early stage in patients with bv-FTD and SD, ether by direct pathological involvement, or indirectly through damage to the temporal pole and amygdala, which are heavily interconnected with the ventromedial frontal lobe (Mummery et al., 2000).

The Kluver-Bucy syndrome has been known about by neurologists for some time, for its distinct cluster of symptoms. Bilateral degeneration of the amygdaloid nuclear complex in monkeys, and surgical removal of the temporal lobes in man, result in the Kluver–Bucy syndrome which is characterised by hyperorality, overeating, and the eating of quasi-food items (Bucy and Kluver, 1955; quoted in Ikeda et al., 2002).

The methodology of voxel-based morphometry has revolutionised our understanding of eating abnormalities in dementia. The aim of VBM is to identify differences in the local composition of brain tissue, while discounting large scale differences in gross anatomy and position.

This is achieved by spatially normalising all the structural images to the same stereotactic space, segmenting the normalised images into gray and white matter, smoothing the gray and white matter images and finally performing a statistical analysis to localize significant differences between two or more experimental groups.

vbm brain

The study by Howard Rosen and colleagues examined neuroanatomical correlates of behavioural abnormalities, as measured by the famous rating scale known as the ‘Neuropsychiatric Inventory’, in 148 patients with dementia using a brain imaging technique called voxel-based morphometry (Rosen et al., 2005). According to the authors, eating

behaviours did not uniquely associate with any specific brain region. The authors instead emphasized that eating behaviours in FTD are indeed complex and varied, and include carbohydrate craving, overeating with weight gain, obsessions for particular foods and occasionally oral exploration of nonfood objects, which may not always coexist in an individual patient (Miller et al., 1995).

Marked disturbances in eating behaviour, such as overeating and preference for sweet foods, are also commonly reported in bvFTD. And there has been for some time this might have something to do with a small area of the brainstem known as the “hypothalamus”.

The hypothalamus plays a critical role in feeding regulation, yet the relation between pathology in this region and eating behaviour in FTD is unknown.

The study by Piquet and colleagues (Piquet et al., 2011) identified significant atrophy of the hypothalamus in persons with bvFTD. Indeed, persons with prominent eating disturbance exhibited significant atrophy of the posterior hypothalamus. Features of eating disturbance, such as increased appetite, preference for sweet foods, and an increased tendency to eat the same foods, were present only in the bvFTD group, but were not observed in the healthy controls.

Taste and flavour are intimately enmeshed with one another. Deficits of flavour processing may be clinically important in FTD.

To examine flavour processing in FTD, Omar and colleagues (2012) studied flavour identification prospectively in 25 patients with FTD (12 with bvFTD, eight with semantic variant primary progressive aphasia (svPPA), five with non-fluent variant primary progressive aphasia (nfvPPA)) and 17 healthy control subjects, using a new test based on cross-modal matching of flavours to words and pictures (Omar et al., 2012).

Brain MRI volumes from the patient cohort were analysed using voxel-based morphometry to identify regional grey matter associations of flavour identification. Relative to the healthy control group, the bvFTD and svPPA subgroups showed significant deficits of flavour identification, and all three FTD subgroups showed deficits of odour identification.

Flavour identification performance in the combined FTD cohort was significantly associated with changes in distinct regions of the brain: grey matter volume in the left entorhinal cortex, hippocampus, parahippocampal gyrus and temporal pole. This profile, in fact, comprises brain substrates in the anteromedial temporal lobe which have been previously implicated in the associative processing of chemosensory stimuli (e.g. Gorno-Tempin et al., 2004).

Furthermore, in an interesting voxel-based morphometric study by Whitwell and colleagues, the authors found distinct neuroanatomical signatures of different abnormalities of eating behaviour (pathological sweet tooth and increased food consumption or hyperphagia) in individuals with frontotemporal lobar degeneration (FTD) (Whitwell et al., 2007).

In that study, sixteen male patients with FTD were assessed clinically.Volumetric brain magnetic resonance imaging was performed in all patients and in a group of nine healthy age-matched male controls and grey matter changes were assessed using an optimised VBM protocol.

Compared with healthy controls, the FTD group had a typical pattern of extensive bilateral grey matter loss predominantly involving the frontal and temporal lobes. Within the FTD group, grey matter changes associated with different abnormal behaviours were assessed. The development of pathological sweet tooth was associated with grey matter loss in a distributed brain network including bilateral posterolateral orbitofrontal cortex (Brodmann areas 12/47) and right anterior insula. Hyperphagia was associated with more focal grey matter loss in anterolateral orbitofrontal cortex bilaterally (Brodmann area 11).

Carers’ reports of changes in eating behaviour show that various forms of increased eating are commonly found at some stage in the course of dementia (Morris et al., 1989).

According to Keene and Hope (1998), Both studies showed that hyperphagia is a stable condition, generally occurring as a single episode. Duration of hyperphagia varied, ranging from 4 months to over 3 years in a few subjects. This is likely to be an underestimate as the end of the hyperphagia was often masked by the preventive measures taken by the carer.

Hyperphagia and associated eating changes occur frequently in DAT, and lead to considerable morbidity. However, the neurochemical basis for these neuropsychiatric behaviours is at present unclear. Medications known as selective serotonin reuptake inhibitors (SSRIs) have shown efficacy in the treatment of bulimia nervosa and binge eating disorders (Milano et al., 2005), as well as suppressing rebound hyperphagia in rats (Inoue et al., 1997).

Tsang and colleagues (2009) measured serotonin transporters, 5-HT1A, 5-HT2A, and 5-HT4 receptors using radioligand binding assays in the post-mortem temporal cortex of a cohort of controls and DAT patients longitudinally assessed for hyperphagia (Tsang et al., 2009). We found significant decreases in 5-HT4 receptor densities in the hyperphagic, but not normophagic, DAT group.

serotonin pathways

Intriguingly, Peter Nestor has described a virtual resolution of severe food and alcohol bingeing in anFTD patient using low-dose topiramate (Nestor, 2012). The prompt relapse on withdrawal and subsequent remission with reinstatement perhaps suggests that the improvement was causal and not coincidental to this behaviour abating as part of the natural evolution of the illness.

It will be interesting to work out whether the effect of topiramate is a primary one on eating behaviour, or part of a wider effect of topiramate on impulse control possibly involving serotonin somewhere (Pompanin et al., 2014).

It is clear that recent technological advances in neuroimaging have been able to shed much light on changes in eating behaviours in persons with dementia from different clinical diagnostic groups. In time, this might lead to suitable medications which might change these behaviours which can become difficult for some.

 

 

References

Cummings, J.L., Duchen, L.W. (1981) Kluver-Bucy syndrome in Pick disease: clinical and pathologic correlations, Neurology, 31, pp. 1415–22.

Gorno-Tempini, M.L., Rankin, K.P., Woolley, J.D., Rosen, H.J., Phengrasamy, L., Miller, B.L. (2004) Cognitive and behavioral profile in a case of right anterior temporal lobe neurodegeneration, Cortex, 40(4-5), pp. 631-44.

Ikeda, M., Brown, J., Holland, A.J., Fukuhara, R., Hodges, J.R. (2002) Changes in appetite, food preference, and eating habits in frontotemporal dementia and Alzheimer’s disease, J Neurol Neurosurg Psychiatry, 73(4), pp. 371-6.

Inoue, K., Kiriike, N., Fujisaki, Y., Kurioka, M., Yamagami, S. (1997) Effects of fluvoxamine on food intake during rebound hyperphagia in rats, Physiol Behav, 61, pp. 603–8.

Keene J, Hope T. (1998) Natural history of hyperphagia and other eating changes in dementia, Int J Geriatr Psychiatry, 13(10), pp. 700-6.

Mechelli, A., Price, C.J., Friston, K.J., Ashburner, J. (2005) Voxel-based morphometry of the human brain: Methods and applications, Curr Med Imaging Rev, 1(2), pp.105-113.

Mennell, S., Murcott, A. van Otterloo A. (1992) The Sociology of Food: Eating, Diet and Culture. Sage, London.

Milano, W., Siano, C., Putrella, C., Capasso, A. (2005) Treatment of bulimia nervosa with fluvoxamine: a randomized controlled trial, Adv Ther, 22, pp. 278–83.

Morris, C. H., Hope, R. A. Fairburn, C. G. (1989) Eating habits in dementia: A descriptive study, Brit J Psychiat, 154, 801-806.

Mummery, C.J., Patterson, K., Price, C.J., Ashburner, J., Frackowiak, R.S., Hodges, J.R. (2000) A voxel-based morphometry study of semantic dementia: relationship between temporal lobe atrophy and semantic memory, Ann Neurol, 47(1), pp. 36-45.

Nestor, P.J. (2012) Reversal of abnormal eating and drinking behaviour in a frontotemporal lobar degeneration patient using low-dose topiramate, J Neurol Neurosurg Psychiatry, 83(3), pp. 349-50.

Omar, R., Mahoney, C.J., Buckley, A.H., Warren, J.D. (2013) Flavour identification in frontotemporal lobar degeneration, J Neurol Neurosurg Psychiatry, 84(1), pp. 88-93.

Piguet, O., Petersén, A., Yin Ka Lam, B., Gabery, S., Murphy, K., Hodges, J.R., Halliday, G.M. (2011) Eating and hypothalamus changes in behavioral-variant frontotemporal dementia, Ann Neurol, 69(2), pp. 312-9.

Pompanin, S., Jelcic, N., Cecchin, D., Cagnin, A. (2014) Impulse control disorders in frontotemporal dementia: spectrum of symptoms and response to treatment, Gen Hosp Psychiatry.

Rosen, H.J., Allison, S.C., Schauer, G.F., Gorno-Tempini, M.L., Weiner, M.W., Miller, B.L. (2005) Neuroanatomical correlates of behavioural disorders in dementia, Brain, 128(Pt 11), pp. 2612-25.

Tsang, S.W., Keene, J., Hope, T., Spence, I., Francis, P.T., Wong, P.T., Chen, C.P., Lai, M.K. (2010) A serotoninergic basis for hyperphagic eating changes in Alzheimer’s disease, J Neurol Sci., 288(1-2), pp. 151-5.

Whitwell, J.L., Sampson, E.L., Loy, C.T., Warren, J.E., Rossor, M.N., Fox N.C., Warren, J.D. (2007) VBM signatures of abnormal eating behaviours in frontotemporal lobar degeneration. Neuroimage, 35(1), pp. 207-13.

 

 

 

 

Presentations by Shibley Rahman at the Alzheimer Europe conference 2014 on autonomy and dignity

Shibley Rahman 0 Comments

This year’s Alzheimer Europe conference is on ‘Autonomy and dignity’ between 20-22 October 2014.

I think it is timely that this conference is taking place at this important stage of the development of English national policy.

The direction of travel is a fully integrated health and care system, where people are signposted to information quickly and can make appropriate decisions.

The person living with dementia must come first; but we are also moving to a situation where a number of different people, such as friends, family, unpaid caregivers, paid carers, social care practitioners or nurses, might help to influence a personal care plan.

Ideally, a person living with dementia will be given in the future good care and support, in accordance to his or her known wishes, from the point at which a correct diagnosis is made.

Autonomy is part of the medical construct for ethical behaviour; beneficence, justice and non-maleficence are critical too.

With the ideal of autonomy, it’s vital that no ‘coercion’ takes place for people with dementia who are able to make autonomous decisions.

There should never be an illusion of people living with dementia where they are able to make decisions, when those decisions are clearly made on their behalf.

Dignity is pivotal to all dementia policy in England, and the law must be robust in safeguarding vulnerable people too.

I am looking forward to presenting two posters on language and the perception of #G7 dementia.

I am also privileged in that I have been chosen to present one of the few oral presentations. I am doing on this on the future of healthcare systems for dementia in England, arguing that policy aims, in particular universality and equity of access, will not be satisfied from a private insurance market.

I will be joined by my close friends Jayne Goodrick and Chris Roberts.

[photo by kind permission of Chris R]

J and C

Please feel free to consider the research I’ll be presenting on behalf of myself, Kate Swaffer (living with a dementia and student at the University of Wollongong), Dr Peter Gordon (Consultant Psychiatrist), Simona Florio (Healthy Living Club, Stockwell), and Prof Facundo Manes (Chair of Behavioural Neurology, University of Favorolo, Buenos Aires; Co-Chair for research in dementia and aphasias for the World Federation of Neurology).

 

Private markets vs universality (oral presentation)

Future dementia care

Language used in media presentation of the main #G7dementia event held in London

Language

 

Perceived functions of #G7dementia

G8

Trivialising dementia – too much inappropriate rocking of the boat?

Shibley Rahman 1 Comment

When I wrote my highly successful book, “Living well with dementia”, using the phrase deliberately from the 2009 English dementia strategy document for England, I never knew the phrase was being bastardised so much for often very trivial initiatives in dementia.

On the other hand, I had huge delight in seeing its immediate relevance to a carers’ support group I went to last week.

I feel deeply hurt that the serious issues in my book, such as advocacy for mental capacity, the presentation of the cognitive neurology of the dementias, or the use of ambient-assisted technology have not been widely discussed amongst the wider community.

In that, I feel the book has failed.

I welcome proposals for the next Government to maximise money into actual service, and to re-establish health funding in line with other comparator countries.

Commissioning in dementia is now not based on what is best for the person for the person with dementia, but what is best for your Twitter commissioner friends.

I look forward to the Health and Wellbeing Boards playing a pivotal rôle in establishing some sort of normality for what commissioning in living well with dementia might be as a value-based outcome.

The strangehold of “shiny”, “off the shelf” “innovative packages”, in the drive for the current Government to ‘liberalise’ the financial market in dementia has acted for a cover for disturbing, unacceptable cuts in dementia service provision in the last few years.

I remember ‘boat rocking’ the first time around from the elegant work of Prof Debra Meyerson.

I do not wish to promote frontline professionals, many of whom have spent seven years at least at medical school or in their nursing training, to become lambs to the slaughter in the modern NHS and social care.

Keeping it real, we know that real frontline professionals in medicine and social care, even if they are not in a downright toxic environment requiring whistleblowing, can find it dangerous being risk appetitive.

Indeed, being risk appetitive, while great for innovation and leadership, can literally be deadly for patient safety.

The next Government has enough on its hands with enforcing care home standards and sanctioning for offences against the national minimum wage for paid carers as it is.

We have to think for a second for the vast army of paid workers in the NHS, as well as the rather well paid people who like their shiny new boxes, I feel.

The schism between the social media and what is happening at service level I think is most alarming, and perhaps symptomatic about how the health and social care services have begun to work in reality.

All too often, I am having first hand experience of busy frontline nurses being dragged in front of entrepreneurs in their local dementia economy to hear shills beginning, “I don’t have first hand experience of caring in dementia, but…”, before the hard sell.

This is tragically being reflected on the world stage too, though I do anticipate that the G7 legacy event from Japan which is looking carefully at their experience with care and support post diagnosis, next year, will be brilliant.

It is important for leaders in dementia to have authenticity.

I have severe doubts and misgivings about what gives the World Dementia Envoy the appropriate background and training in dementia for him to be in this important post.

It is all too easy for ‘thought leaders’ in corporate-like medical charities to have no formal qualifications or training in medicine, nursing, or social care, and opine nonetheless about weighty issues to do with policy.

I am concerned that the global ‘dementia friendly communities’ policy plank appears to have been straightjacketed through one charity in England, when it is patently obvious that various other charities such as the Joseph Rowntree Foundation have made a powerful contribution.

The media have largely not engaged in a discussion about living well with dementia, but engaged simply with Dementia Friends or a story arising out of that.

I am alarmed about the lack of plurality in the dementia research sector.

I think the All Party Parliamentary Group (“APPG”) for dementia have done some valuable work, but their lack of momentum on specialist nurses including Admiral nurses, spearheaded by the charity Dementia UK, seriously offends me.

I am sick of how the notion of ‘involvement’ of people with dementia has been abused in service provision mostly, although I am encouraged very much by initiatives such as from DEEP and Innovations in Dementia.

I think there have been genuine improvements in engaging people with dementia in research, through a body of work faithfully peer-reviewed in the Dementia Journal looking at heavy issues such as the meaning of real consent.

I am now going to draw the line of tokenistic involvement of people with dementia to front projects without any meaningful inclusion.

And in fairness, this tokenistic involvement is, I am aware, happening in various jurisdictions, not just England.

All too often, “co-production” has become code for ‘exploitation’ rather than ‘active partnership’.

The prevalence of dementia is actually falling in England, it is now thought.

The ‘dementia challenge’ was our challenge to making sure that we adequately safeguarded against people rent seeking from dementia since 2012.

In that, I think we have spectacularly failed.

I am overall very encouraged, however, with the success of the huge amount of work which has been done, including from the highly influential Alzheimer’s Society, and from the communitarian activism of “The Purple Angels”.

All this ‘radicalism’ has taken on a rather ugly, conformist twang.

radicalism

Now is though time to ‘take stock’, as Baroness Sally Greengross, the current chair of the APPG on dementia, herself advised, as the new England dementia strategy is being drafted ahead of the completion of the current one in March 2015.

Is the use of GPS “trackers” for people living with dementia necessary and proportionate?

Shibley Rahman 1 Comment

This is the introduction to “Living better with dementia: how champions can challenge the boundaries”, chapter 12, “Do GPS trackers have a rôle to play in living better with dementia?”

 

 

“We live in a ‘surveillance society’. If you happen to log in on Facebook, Facebook can identify your location exactly, and then can offer you a choice of cheap hotels there. The idea that a GPS system (“global positioning system”), as a tracker, can identify you where you are might seem like an invasion of privacy, but not much of an invasion of privacy than Facebook, arguably. And indeed a non-invasive system might be better than a method of physical restraint for certain people with dementia. It would be hard to justify a tracking device in a person who is not a candidate for physical restraint though conceivably?

fb

Tracking for people with dementia raises strong emotions, not helped with some of the discussion acting at the extremes, such as a hypothermic person with dementia found in a ditch due to a GPS tracker. But the conflation of ‘tracking’, with ‘tagging’ as per frequent offenders in the criminal law, is an unfortunate one. At a time when there are international drives towards decreasing stigma in people with dementia, people warn about the mission creep that is offered with tracking: for example, one wonders how long it might be for a GPS tracker to become an implantable micro-chip. The word ‘tracking’ itself, however, is a misnomer, in that these trackers do not actively ‘follow’ people, but can pinpoint someone’s location through the method of ‘trilateral’. Satellite detectors happen to be there, in the same way that public telephone boxes happen to be there. Public telephone boxes take on a different atmosphere if highly illegal activity happen to be taking there, and there is a proportionate need to intervene. But intervene in what? Here we are talking about a criminal activity, rather than intervene in a person at risk of causing harm to himself or herself? The question that someone can consent to doing himself or herself avoiding being at personal harm, exercising too his or her own ethical right to autonomy, and a clear definition of consent depends on a clear definition of capacity. A human right to privacy which is inalienable albeit qualified may transcend capacity, causing further disquiet in legal circles. And, besides, people who do happen to travel beyond their physical zone might not be doing so out of any particular malice: a person with dementia may simply have problems with spatial navigation. Presumption of innocence is pivotal in the law is pivotal, and laying blame on innocent people is unacceptable – even subtlely through terms laced with innuendo such as “wandering”.

One wonders whether the legal definition of capacity across a number of jurisdictions, which depends on an “all-or-nothing” construct, can cope with those dementias where cognitive abilities fluctuate or cognitive demands vary. Is legal capacity to make a sandwich the same as capacity to write a paper on human rights? And who is best to make a decision about fitting a GPS tracker? It must surely cause concern if a caregiver would wish to fit one simply because it makes the monitoring of an individual an easier job, rather than the person with dementia wishes to be more independent. It is therefore clear that there is no right answer to GPS systems in dementia, especially as the term “dementia” itself is a portmantaneau term for lots of different clinical conditions, with different types and ‘severities’. Whether GPS trackers are necessary and proportionate for any one person living with dementia is a rather abstract question, given that there are so many different subtypes of dementia making some more prone to travel beyond their locality than others. With GPS tracking in dementia, we see yet another example where ‘one glove fits all’ approach is a dismal failure.”