Thinking through impacts of dementia friends policy in UK

Through recent chat with Kate Swaffer and Shibley Rahman on twitter, I've been thinking through the benefits and detriments of dementia friends policy in UK.

• Research was a key driver to increase memory assessment clinics – in order to recruit more people and at earlier stage of dementia – we could question whether advocating early diagnosis leads to increased frequency of insecure diagnosis (or a diagnosis which is later changed)
• Politicians joined the support for early diagnosis – Dept of Health people should have known that this would lead to increase in demand on services. Is it ethical to push for earlier diagnosis without treatment options and without appropriate care services?
• I think there is consensus from health promotion or health equity perspectives that tackling stigma and increasing knowledge about dementia amongst the public is good in itself. It has probably also been seen from the narrower perspective of improving likelihood of people coming forward to be diagnosed and hence supporting the points above. I don’t think we have good measures to assess levels of stigma or public knowledge.
• Campaigns by several charities and advocacy by individuals with dementia has all contributed to change in language use in news media. Maybe also it has increased likelihood of people coming forward for diagnosis (as diagnosis rate has increased). Public information and campaigns also has an influence on healthcare professionals which may also have increased likelihood of referral and diagnosis.
• It would be unethical of Dept of Health (as it was) for it’s policy to be to increase diagnosis rate and yet have limited support for the increased number of people who are diagnosed; therefore the Dept has to be held to account for ‘gap’ in services and support available (whether statutory or third sector).
• What are the expected or predictable effects of pushing for earlier diagnosis? At a population level:
• Increase in incidence and prevalence of diagnosis of dementia (broadly speaking)
• Increase in diagnosis of (all) specific types of dementia – including the rarer subtypes
• Increase in dementia-like conditions – ie people who are referred to MAS but are given ‘other’ diagnoses: MCI, functional neurological disorder, depression, (other neurological conditions: Parkinsons?, brain tumour?, mini-stroke?)
• Earlier diagnosis – ie leading to more people with mild dementia, and more people living longer with dementia (ie increase in survival time – similar to improved cancer diagnosis from screening)
• An increase demand, knowledge and motivation to help and support people with early dementia

The implications of these expectations are that there will be (are now) more people with early stage dementia and more with ‘rare’ dementias also more with MCI, functional neurological disorder. More people will be in the community living for longer with mild symptoms. Firstly we must avoid undermining the experiences of these expanding groups of people. Secondly, more ‘low level’ services and support will be required – dementia-friendly communities could contribute to that. Thirdly the greater number of people at early stage in communities will change perceptions of the meaning of dementia. Finally, according to the social model of disability, if we can address stigma and improve people’s lives, we may expect people to live longer, more meaningful lives, with hopefully delayed deterioration of cognitive impairment.

 

Post-normal science part 2

OK, I stopped my last blog half-way through my train of thought. I'm trying to get to the tricky area of science in policy and practice - where it gets messy. I'm coming at this from my work on implementation of science and quality improvement. 

These areas of applied science and also multidisciplinary science have to make different claims to validity or 'truth' compared to normal science, which primarily attempts to be objective. So, in my view applied science or implementation takes some evidence-based theory and it gets mixed with policy framework, economic or market pressures. In public health this mixing should be led by general principles which guide these decisions, such as precautionary principle. My concern is that some discourses such as anti-lockdown, anti-vax etc may contain a grain of evidence-based theory but it is mixed in a different set of values such as market principles, which may lead to solutions which appear morally questionable, such as exacerbating generational divisions (eg locking older and vulnerable people away, whilst supposedly economically active, younger people can go shopping etc).

Now, I'm not sure whether anyone would identify with the discourse that I've outlined, or whether I have caricatured a set of media-represented messages... but my impression of post-normal science is that it takes quite a different set of values or principles as foundation to offer quite a different interpretation of the same data/observations. I also wonder whether post-normal science is a discourse that is pre-empting a Kuhn-ian revolution. That is, with a different set of values the data has different meaning, and hence different recommendations. For me, a key way to progress debates would be to have transparency about assumptions, and also better communication of key aims rather than media-friendly soundbites "herd immunity", "zero-covid" etc

My thoughts on post-normal science, COVID and public health

Prompted by interesting blogs on post-normal science:

Brigitte Nerlich - Public engagement with ‘post-normal science’

Ken Rice - Science in a time of COVID-19

Listening to the modellers instead of public health

From the beginning of news coverage of the pandemic management in UK, the focus has been on modelling the data, flattening the curve, ‘squashing the sombrero’ etc. The days of February and March 2020 seemed to focus on preventing a large second wave, which we heard had been a major cause of death in the 2018 flu pandemic. We were told that the epidemiologist had run models that could compare different interventions; closing schools, airports, etc to tell us which of these could have most effect. Which of these should be prioritised and which could remain open to ‘save the economy’ – thus the concept of a dilemma of either saving the economy or the managing the health crisis was disseminated. The power of these modelling techniques was this apparent intelligence and targeting of interventions, thus ‘saving’ other populations or ‘markets’ that could continue, because the model indicated that they had little impact on future spread of the epidemic. The strength of these techniques are in the raw data available and the weakness in the initial assumptions that make up the model. These assumptions are things like how transmissible is the virus by close contact between people, versus passing in a large building such as an airport, for example.

Modelling was favoured by UK Government, I think, because this was an opportunity to ‘show off’ our latest development in ‘big data’. Also mentioned in the news media was behavioural economics and ‘nudge theory’ – which is another favourite of Government, where the population can be ‘managed’ through friendly nudges rather than draconian legislation. There was talk about fatigue of the population if Government locked down too soon.

I was pleased, initially, to hear that Government were going to ‘follow the science’ – it was a relief after the post-expert years – where we had heard enough from experts. However the science that was chosen to be followed and the interventions prioritised seemed to be selectively chosen.

What was wrong with public health?

Public health professionals have been managing epidemics effectively for over 150 years. Arguably one of UK’s best ‘global exports’, but I guess it was seen as too traditional, or even basic. The strength of the public health approach is that it is not so reliant on initial assumptions, but in the basics of cutting transmission links by isolating people who are ill or may be contagious. Rather than ‘big data’ and ‘smart’ approaches, this requires local resources and public health experts working with local communities. People have to forego some rights in exchange for protection from infection; rights include some elements of privacy, freedom to go to work, to go to the shops. For me, the key issue to learn from the management of COVID is that rather than predicting behaviour of the population, we need to build trust, and this needs to be done at a community level, rather than at a population level. Trust in a local health protection officer may be more easily obtained rather than trust in an app which has access to your personal data.

Public health is not a ‘pure science’ – it’s a multidisciplinary science and also a professional practice. It acknowledges political and economic pressures and attempts to bring to bear the best science from different academic disciplines. I don’t think anyone would connect public health with post-normal science…

Bereavement during COVID19 'lockdown'

Bereavement will affect so many people in so many ways during this time of coronavirus (COVID19 pandemic). The ‘lockdown’ is reshaping everyone’s lives. Grieving at this time will also be incredibly challenging whether the person has suffered with COVID, or of other causes. The following are some contributions from twitter after I asked for ideas for bereavement support. (I am a public health researcher and these are thoughts about what bereavement support is required; I do not have counselling, clinical or psychological qualifications – so these points should not be taken as ‘medical advice’).

Religion

Different religions have different practices around dying, funerals and grieving. It is important that these traditions and religious practices are acknowledged and respected, even if infection control measures must be in place.

What happened in hospital or care home?

The bereaved may have many questions about what happened in the last days of care. Hospitals and care homes have ‘no visiting’ policies, and additionally transport is severely restricted, so many people are dying apart from their spouse, family and care partners. People may feel that they have gaps in their knowledge about how their loved one was cared for and why. Some initiatives have encouraged clinical staff to record care processes in the last days to help the grieving process.

Funeral arrangements

Due to infection control procedures, there are many constraints on the usual care of the deceased and the funeral. People may feel upset that they haven’t been able to be personally involved, or haven’t been able to arrange the appropriate care. Funerals have been restricted to a small number which means that people may feel that it hasn’t been a ‘proper’ funeral. Mourners who are present in person may feel additional pressure and not have support of family and friends. Innovations in technology have enabled family and friends at a distance to join the funeral via teleconference eg Zoom or skype.

Usual routines

The usual social routines including going to work, social engagements and church/mosque/temple are not occurring. These are normally brief contacts which may help people to express and share their grief. The days can run into each other which may lead people to become absorbed in their grief and problems such as depression may go un-noticed.

Difficulty in accessing health and support services

The crisis of the pandemic and newspaper headlines about ‘protecting the NHS’ have led many people to believe that they should try to avoid asking for help. We know that this is happening because fewer people are attending GP and hospitals compared to usual (previous years). This may mean that people also feel inhibited from asking for help with their feelings and emotions during bereavement.

Tele-support

While face-to-face bereavement counselling may not be an option, phone counselling should continue to be accessible. As people are becoming accustomed to videoconferencing (Zoom, skype) visual (non-verbal) communication can add an important extra dimension. Some people may be accustomed to alternative online communication styles, such as ‘instant messenger’ chat, facebook, or even virtual reality worlds. Could these be used to support individuals or groups, including peer support.

Special roles - who supports the supporters and volunteers?

People are taking on voluntary and other community roles at the moment. There are community support groups and the NHS volunteers, as well as more specialised volunteering (first aid, helplines, food banks). Any of these may experience grief or trauma and may require support. This type of support may be more like support for professionals including doctors and nurses – and resources should be made available via voluntary organisations. However, volunteers may not see themselves in this way, and therefore may not consider seeking support, so they may need a ‘nudge’.

Communication or cognitive difficulties

There are many people who, in the rush to respond to COVID pandemic, may be overlooked. I’m thinking of people with dementia or cognitive impairment, visual or hearing impairment, autism and learning difficulties and many more who may need additional support to help them understand and come to terms with grief. From what I’ve heard listening to care partners of people with dementia, daily mentions of the loss of their loved one is needed to enable them to understand bereavement.

Child carers

Children may require more specialised support and there are specialist organisations that can offer help. Children can also be carers, and may require additional support as their role changes and they make new friendships.

Acknowledgements and further information

Thanks for comments and suggestions from people on twitter including; Kathryn Mannix, Wendelien McNicoll, John Wilson, Sara Mathews, Lucy Selman.

Heres some links that may be useful;

Surviving the Tsunami of Grief, Katrina Taee & Wendelien McNicoll https://t.co/haTozMScQD?amp=1 

Cruse Bereavement Care 0808 8081677 https://www.cruse.org.uk/
Bereavement Alliance https://nationalbereavementalliance.org.uk/
Counselling Directory https://t.co/hpLPTlzAu2?amp=1
Organising a meaningful funeral, Quaker Social Action https://t.co/TNGs9TneRF?amp=1
Let's talk about death and dying, Age UK https://www.ageuk.org.uk/information-advice/health-wellbeing/relationships-family/end-of-life-issues/talking-death-dying/
Sudden Supporting people after sudden death including COVID-19 https://www.suddendeath.org/covid-19-bereavement/advice-for-bereaved-people

Social distancing to avoid Coronavirus

It's day one of social distancing. I'm regretting taking the boys swimming at the weekend. I do have a slight sore throat - but it's probably nothing. My wife is an NHS worker, and her parents live close - we have to do all we can to protect them and older people on our road and in our village. Including people who may be immunocompromised due to cancer treatment etc.

This blog really made me think - we have to do this now:
https://medium.com/@ariadnelabs/social-distancing-this-is-not-a-snow-day-ac21d7fa78b4

and what the implications of social-distancing and how to survive it (mentally).

I'm involved in a help and support group in our village - I've found these resources to help with that:
https://covidmutualaid.org/resources/

If this incompetent, callous Government won't protect us, we need to look after our own communities.

Community resilience plan for Coronovirus

Prof John Ashton advocated communities set up 'mini-COBRA' groups to support everyone in their village, neighbourhood etc. Here's my first thoughts:

Set up online systems so that everyone can access - eg Google docs, Google sheets, dropbox or whatever. We may want to share 3 types of information:

1. Signposting to public information - from Public Health England, Notts County Council, Parish Council.
2. General (up to date) information about local services, availability of shops, pharmacists etc
3. Personal or private information -
1. Names of volunteers, or 'helpful people in the community' (fairly low privacy)
2. Names of people who would like help or support, which may include addresses (high privacy protection required - GDPR)

Spaces and places - while people will want to be 'socially isolated' - we have to avoid physical inactivity (over months) and avoid loneliness. Aka avoiding kids going stir-crazy...! So at this stage we should prepare places that people can visit in small numbers (to minimise risk) of spreading virus. These places should be assessed for risk of contamination and a plan developed for regular cleaning (eg soap & hotwater - but I'm sure there will be guidelines). I'm thinking play park, village halls, etc.

Vulnerable people and care homes / nursing homes. We need to make sure that vulnerable people (including older people, people with disabilities etc) have food, hygiene/sanitary products, social contact. For people in care homes, we could support friends and relatives making contact via skype etc. and similarly find people in community with friends/relatives in care homes and enable them to make contact via skype.

People with clinical jobs or other 'key workers' (police, fire, council, pharmacists) - we need to support these so that they can keep doing their jobs. They also may have high contacts through their jobs, so we should help them to avoid too many contacts the the village. Support with: a) food & supplies, b) child care, c) contact with friends / relatives

People who are self-isolating - no doubt there will be guidance from a health point of view. From a village perspective we need to know who they are so that we can support people with food, etc. The more we can support people, the less likely they will break self-isolation early.

Volunteers can help with above. Also we need a team of volunteers to 'spread health information' - ie help people to understand the day-to-day aspects of hygiene, 'social-distancing', self-isolation, etc. Also reassurance or support for relatives of people who have been taken to hospital.

Please let me know if you have other thoughts, comments or questions?

on twitter: @nchadborn

https://docs.google.com/document/d/1jDOTZ4wYqA4G1d_iot3Mf-U8txX2NVgg5TClL6uFj-c/edit?usp=sharing

Response to Social Prescribing blog by Anya de longh

Community assets?

Great blog Anya! I'm reassured that person-centred care is becoming mainstream and more than a 'policy' word, but I think 'prescribing' carries baggage that makes it a double-edged sword. Firstly, why is social prescribing to join a gym or do gardening likely to work (for people who don't 'normally' do these things) - partly because of the sense of authority of the doctor giving this advice, in a directive way?
Secondly prescribing (and access to resources-whether drugs or gym) is tied up with evidence - the idea that the doctor has the expertise to weigh up the technical evidence and guide your shared decision-making process. Whilst some people might argue that we can 'test' the effectiveness of going to the gym in the same way as a drug (randomised controlled trial) I believe this is the wrong way of looking at 'social interventions' and that a social prescription will never achieve an equal weight of quantitative evidence base as a pharmaceutical prescription. This immediately puts the social on a sloping playing field of evidence (for the doctor practicing 'evidence-based medicine').
An alternative approach, as Michael Marmot might advocate, is as follows: we know people who live in disadvantaged communities have poorer access to greenspace, opportunities to exercise, and hence higher chance of poorer health. The preventative approach (proportionate universalism) would argue for investment in communities - parks, gardens, gyms etc (as chosen and designed by the local community). Social norms, clubs, park runs etc, then encourage people to make use of these resources.
So, I think social prescribing is good - as far as it goes - but a real preventative approach would invest in communities and community assets, rather than the continual focus on the individual.