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Living well with the dementia app. Back to the future?
Various inventions were predicted for 2015 in the film “Back to the Future”.
Of course, an invention is not the same as an innovation.
There is a subtle difference between these two words, but the difference is an important one.
An invention is the formulation of new ideas for products or processes, but an innovation is all about the practical application of new inventions into marketable products or services.
According to top HSJ pioneer, Dr Amir Hannan, innovation has a specific definition.
About doing or making something completely new that has never been done before, which leads to a material change in thinking, behaviour or outcomes.
One of the brilliant inventions/innovations was the “hover board”.
Probably a good thing these haven’t been invented for the mass market yet – though some clever bod has come up with a prototype – the baggy jeans and Converse look is just so Nineties.
The background to the modifiable factors relating to dementia are well rehearsed.
Approximately half of dementia cases might be attributable to known modifiable protective and risk factors (Smith and Yaffe 2014). The protective factors include the factors that determine brain development in early life such as maternal nutrition and health, and nutrition and cognitive development in early years. Education and lifelong learning also protect against dementia as does involvement in social networks. The risk of dementia is raised by substance abuse in adolescents and young people, head injuries and depression. Dementia also shares important risk factors with the major non-communicable diseases (NCDs) including cardiovascular disease, diabetes, cancers. These are the behavioural risk factors of physical inactivity, smoking, alcohol and poor diet, and the linked intermediate risk factors such as high blood pressure, raised cholesterol and obesity.
There has been some difficulty in getting this relatively simple public health message across.
This is illustrated, for example, by the rather resistant belief amongst people that ‘nothing can be done about dementia’. In fact, an enormous amount can be done to promote living well with dementia. And some factors may indeed slow rate of progression or delay onset, in a way we don’t properly understand yet.
Some campaigning initiatives have started to gain momentum, though. This infographic is from the Alzheimer’s Disease International “World Alzheimer Month”.
And there are developments afoot in the provision of information for patients.
Here’s an example of what Highbury Grange Medical Practice seem to be offering.
The aim is for all patients in England will have access to their GP medical records online by 31st March 2015. This means you can have secure access to relevant parts (current medications, immunisations and allergies)of your record from devices that can access the internet.
And now Sir Bruce Keogh has got really into ‘wearable technology':
It sounds reasonably convincing.
Prof Sir Bruce Keogh believes that gadgets similar to fitness trackers, which are growing in popularity, and others resembling games consoles will revolutionise the monitoring of patients’ health, especially those with a serious condition.
And…
“Technology is emerging which enables those to be brought together and transmitted through mobile phones or other methods where health professionals can analyse them and act upon any warning signs,” Keogh says.
Wearable technology could easily prove useful for people with heart failure – one of the most common causes of admission to hospital – and thus relieve the strain on overcrowded hospitals.
“I see a time where someone who’s got heart failure because they’ve had a previous heart attack is sitting at home and wearing some unobtrusive sensors, and his phone goes, and it’s a health professional saying: ‘Mr Smith, we’ve been monitoring you and we think you’re starting to go back into heart failure. Someone’s going to be with you in half an hour to give you some diuretics’,” says Keogh.
Technology “enables you to predict things, to act early and to prevent unnecessary admissions, thereby not only taking a load off the NHS but, more importantly, actually keeping somebody safe and feeling good”.
For people living well with dementia, simple apps could be made which could be installed on smartphones.
For certain persons living with dementia, prone to “wandering” (a term I very strongly dislike), GPS location devices might be of interest; but by no stretch of imagination are these devices relevant to all people living with dementia.
The app might also be able to monitor aspects of cardiovascular health. There is a strong link between cardiovascular health and cerebrovascular health, and indeed the success of tackling cardiovascular risk factors in primary care has caused some interest in the possible falling in England of the prevalence of dementia.
I have often ‘complained’ to other specialists in dementia how little we know about how easily people living with dementia, across different types of dementia, at different extents of ‘severity’, cope with all technology designed to help them live with dementia.
But it is possible that such apps could be designed to be compliant with the Equality Act (2010), offering giant lettering for those people with visual object perception problems, or ‘read aloud’.
There could be a set of questions like ‘Do you have trouble remembering dates?’, ‘Do you have problems remembering phone numbers”, “Do you have problems cooking?”, which could trigger further intervention by a community occupational therapist.
If someone living with dementia notices their legs going stiff, or they have trouble walking, a referral to a community physiotherapist could be triggered.
If someone living with dementia notices the development of a ‘sweet tooth’, a referral to a community dietitian could be triggered.
And so on.
There might be ‘menus’ which are more suitable to caregivers, who are often spouses, or children (particularly daughter and daughter in laws), but including paid carers. There are clearly ethical issues here.
I anticipate such apps will be of interest to people who’ve just been given a diagnosis of dementia, but the usual criticisms will hold (i.e. it’s another ‘to sell’ to someone with a personal budget, it’s “typical privatisation of health and care). But I feel we should be looking into the social prescribing of facility to those who desire them, as an alternative to expensive drugs which can have limited efficacy.
Back to the future..
or back to planet Earth.
Further reading
Smith D. and Yaffe K. (2014) Letter: Dementia (Including Alzheimer’s Disease) can be Prevented: Statement Supported by International Experts. Journal of Alzheimer’s Disease 38: 699–703 DOI 10.3233/JAD-132372
My presentation for my book launch of ‘Living well with dementia’ for 15/2/14
This is a talk I will be giving in Camden at 3pm to guests of mine, to celebrate the launch of my book on living well with dementia.
Are individuals living with dementia “recipients” of care?
Language is very important. Only this week, the media was stuffed full of talk of dementia being a ‘horrible disease’, and people ‘suffering’.
A recent Telegraph article cited, “Health Secretary Jeremy Hunt says it is “utterly shocking” that only half of people suffering from dementia are being formally diagnosed.”
Society has a certain image of dementia. It really is no use denying that this image is horribly negative, and feeding on this fear can be low-hanging fruit for raising funds through charity.
In this scheme of thinking, those with the dementia are only viewed through the prism of their illness, and this is often reduced to the image of its last and most tragic phases.
It is as if as soon as a diagnosis of a progressive dementia is made, the person in question, it is perceived by the rest of society, automatically becomes incapable of taking any autonomous decisions, loses his/her personality and identity and immediately needs to be cared for.
In reality, however, this illness can develop quite slowly: between the moment when it is diagnosed and the terminal phase, there may be years of development. Moreover, people living with the illness can rarely have the opportunity to express their thoughts and feelings about it: there is communication about them, but only rarely with them. The individual sadly disappears behind the blanket label of an illness.
The term “suffering”, however, sounds negative, and does not support the concept of “personhood”, and certainly does not fit with a philosophy of “hope” and “wellness”.
The way the NHS has latterly been structured as a market also reinforces this customer-supplier master-servile relationship. Dementia care is a ‘service’ you can pay for, with or without a personal health budget.
The dominant notion itself that the need of people with dementia to socialise should be met by “services” is disempowering, for the concept of service incorporates the notions of “providers” and “recipients”; of the “helpers” and “the helped”, of “us” and them”.
These notions further perpetuate the stigmatising assumption that people with dementia are only able to participate in relationships as “receivers”, and that relating to them is a problem for those who do not have the disease: they further advance the widespread perception that people with dementia are, essentially, a “burden” on their families and society.
This term “burden” can perhaps help validate the ‘burden’ some caregivers experience, but should not be assumed and should be avoided when speaking in generalities such as public presentations.
This language and terminology are in desperate need of change, and the prevailing perception of people past the first stages of dementia as just receivers of care, and users of services, needs drastic reframing.
The truth is that, as the symptoms of the disease progress, people with dementia can still play an active role in society, if provided with support, and this support can very often be provided by fellow citizens, rather than by professionals paid to deliver a service.
The purpose of person-centred language is to recognise the impact of language on thoughts and actions, to ensure language does not diminish the uniqueness and intrinsic value of each person.
Personhood is pivotal. This is the 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.
The aim is to create the positive conditions where the person can live without stigma; where people are treated with warmth and authenticity, listened to without judgment and are given opportunity for self-expression.
There are, however, ways to ‘reframe’ this debate.
Framing is a fast developing concept, as much in communication sciences as in other disciplines. This is partly due to the fact that it is a rather flexible approach that lends itself to many applications.
When there is a question relating to knowing how a particular subject is presented, in the media for instance, framing immediately springs to mind.
Instead of painting the illness as a homogenous and unchanging totality, it would be preferable to place the accent on its progressive and developmental nature.
One can put the accent on continuing to be a real person despite the decline due to the illness: acknowledge the personality, the identity and the life journey of those with a progressive dementia.
One can also develop empowerment and social inclusion with people with a progressive dementia. Such individuals are more than passive and dependent consumers of help and care services. They have resources that should be mobilized. The principle of inclusion implies that society is composed of all its citizens. However, this needs competent leadership.
Let those who living with dementia speak. It will provide others with one of the most powerful counter-examples in relation to the current dominant image, which often makes the individual disappear behind his/her illness.
Let your respect for those living with the dementia be obvious in what you have to say.
It is useful also never to forget that people with Alzheimer’s disease also have their own life story, their own personality and character. This is because their long-term memories are relatively preserved, due to a phenomenon first characterised by the French neurologist Ribot in the 1880s. Enable these aspects to be expressed too.
Those who disseminate messages, especially via texts designed to influence people, may deliberately choose a frame that the reader is supposed to pick up and appropriate so as to henceforth view reality in this way.
Given that frames form part of any culture, many of them are common to both the sender and the recipient of a given message.
The question of whether framing is a conscious process remains open to discussion: how far will the writer of a given text deliberately choose a frame that serves his own interests?
As we approach the G8 leading on the subject of what is important in dementia diagnosis, research and care, it is all the more important that we frame the discussion properly.
There are so many stakeholders in English dementia policy, it can be quite uncertain know where the current dementia policy has come from.
David Cameron has often argued that ‘it is not where you’ve come from, it’s where you’re going to’. If one of the goals is destigmatising dementia in society, how we articulate the present debate today is vital to our progress tomorrow.
This means not talking about ‘horrible’ and ‘suffering’ in a way as to encourage ‘moral panic’.
This means treating people with dementia, living at all stages with any particular condition, with the dignity they deserve; this will enormously help carers too.
