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Dementia Care: The Little Known ‘Secret’ To Successful Care of Someone Living With a Dementia
Failing with understanding, controlling and facilitating stress in the built and social environments of someone living with a dementia, particularly if they are living in some kind of residential facility where they are not ‘in control’, is a blight on modern care approaches. Over the next few blog entries we will learn about stress, what it is, how it affects us, why it is SO important a concept in dementia care and, critically, what we can do to apply this learning
Dementia is a stressor
Even at their most well-lived, the disease processes constituting the dementia syndrome provide a source of increasing challenge to the resources of the affected individuals. This results in a condition of chronic stress which becomes punctuated frequently with a series of increasingly acutely ‘stressful’ episodes.
At its most purely survived, dementia can consist of a regular 24-hour series of gradually more catastrophic, acutely challenging and stressful experiences where relief becomes elusive and, tragically, if left unchecked, less and less frequent.
Put more starkly: the processes of dementia makes the experience of day-to-day living an acute challenge.
It is a challenge, however, that I believe can be mediated with educated and timely inputs, and where the caring contract may be negotiated to preserve both dignity and quality of life. I also believe, however, having witnessed it many times, that without understanding and educated care intervention at these variously challenging times, the experiences of daily living can prove to become so insurmountable that the person can simply retreat from ‘being’ (Kitwood, 1994).
The repeatedly stressful experiences of living with an advancing dementia creates an intolerable strain upon an individual’s psychological and physical system reserves and severely strains their coping processes. The pressures of coping may tip the person repeatedly into using up their reserve physical and psychological capacity and this ‘running on empty’ may move their behaviours towards those that may present a challenge to themselves or others and which can ostracize them from their loved ones and immediate society.
Eventually, through the continuing attack upon their resources, these systems and the attendant immune defences of the body begin to fail. This failure of the human system to be able to cope with the challenges of day- to- day living and to fight off opportunistic infections, and the resultant damage inflicted on bodily organs and systems, may be one of the major variants explaining the dramatic differences in survivability of the illness.
The premise of my approach, my model, is that armed with the knowledge of human systems and their ability to adapt and adjust, and with a firm application and emphasis on biopsychosocial, person-centred approaches to dementia care, these challenges can be reduced. Reserves can be ‘topped up’, future demands mitigated, the experience of living in care can be enhanced and living with one of the progressive dementias can be made much less traumatic.
This approach is not easy and the knowledge fields and research findings from many different but related caring disciplines must be successfully synthesised together to achieve our aims.
Synthesising interdisciplinary knowledge bases to achieve dementia care excellence
Dementia caring is an extraordinarily challenging, yet ultimately tremendously rewarding, field. It is rightly now seen as a specialism of and unto itself, however there within lies the challenge.
The caring professions still work in an extremely ‘tribal’ way and we will return to this challenge again and again in the coming weeks and months. However, we as professional carers must navigate this ‘system of parts’ into a whole service that assists us to assist the ‘whole person’ who has come to us for care and kindness
Stop seeing parts and start seeing wholes
Many researchers and medical practitioners have attempted to position stress and emotional impact and reactions in separate contexts. This makes little sense in reality as one is inextricably linked with the other (Lazarus, 1999).
Stress can be said to be positive or negative. But even the most positive of emotions, love, when it goes wrong can become extremely stressful and cause all type of problematic physical reactions. These physical responses to emotional upset are often referred to as psychosomatic, from the Greek Psyche–Somatikos which means literally, ‘physical illness caused by the mind’.
The highly respected and influential Professor Richard S Lazarus (1999) has presented a new synthesis of ‘stress’ based on this very position. He has revolutionised the theory of stress and appraisal demonstrating that emotions which arise from stress are not a separate entity as original stress theorists proposed, but are an intricate part of the ongoing stress condition.
It is very important for you to understand the basic premise of Lazarus’s works as they can be juxtaposed for dementia.
Coping or failing to thrive
It is through this new integrated position that we begin to understand that a person will either cope, or not, with the stress of their daily habitat, demands or routine by their personal internal appraisal of how well they are equipped to deal with the challenges presented to them, and in turn this appraisal is associated with the resultant emotions this appraisal raises.
Remember we discussed previously the pressures exerted by the person’s environment and how these could overwhelm and that our role was to recognise the pressure threshold and to control this? Well in the coming weeks this will begin to make more and more sense to you and you will understand why some people cope and other fail to thrive in the same circumstances.
Personal stress thresholds
What appears to present as little challenge for one person can present as an unfathomable and unmanageable stress producer for another. Internal psychological factors, rather than actual physical ability, appear to be the determinant factor.
As human beings we respond to dangerous, threatening or overwhelming situations by subconsciously deploying our most basic weapon of defence: the fight, flight or freeze reaction.
Under threat (stress), there is an automatic release of adrenaline and other hormones designed to allow our body to protect itself. However, if this point of arousal is maintained for any lengthy period, cortisol is manufactured and the hypothalamus-pituitary-adrenal systems are persistently activated; this level of abnormal and prolonged arousal is dangerous to our physical survival.
The aspect for you to consider is that this automatic physical response will occur whether the danger is real or perceived. The same physiological actions result whether thinking about danger or actually experiencing it in real time (Horowitz, 1997).
In the dementia experience periods of doubt, fear and persecution are symptomatic of the losing of memories and abilities. It is pertinent, therefore, to assume that a greater level of overall activation of the adrenal response occurs through these intra-psychic processes, and that the greater the sensitivity of the person to their symptoms, and to external pressure, then the more damaging the stress becomes to the individual.
Defining stress and the stress process
How can we define stress? Stress implies that the environment is felt to be making demands on a person that exceeds their ability to cope (Selye, 1956).
A possible definition is that stress - is a situation or condition which places the individual under some pressure, involves adjustment in behaviour and can cause changes which are unpleasant, sometimes maladaptive and even associated with physical damage.
The situation itself is called the stressor and the resulting behaviour as the stress response.
For genuinely non-harmful dementia care to become possible, it seems essential to always assess the impact your and other’s behaviour and actions will have upon the person. It is vitally important also to remember where there is group living, there is the impact of the person’s living environment and of their own behaviour on others within it.
If either of these areas can be perceived to have possible stressful consequences that may result in a negative stress response, for either the person living with dementia or those around them, including you, the carer, then changes must be considered in both approach and the environment itself.
Next week we will look further at stress, appraisal, individual appraisal and how this affects the person’s quality of life.
Till next time.
Paul Smith – Dementia Care Expert