Understanding Dementia Essay (Trinity Masters 1st Year)
The statement of Downs et al 2006 that there are many understandings of dementia is intriguing as it highlights the different philosophies of dementia and how people’s mix of beliefs about dementia in society can vary and so influence care-giving in practice.
The Person-Centred understanding (Kitwood 1997) has become a normal mainstream perception in modern Western culture. It leads to an approach adopted by the author in his professional role as a general nurse and in his social roles where personal dignity is paramount (An Bord Altranais [ABA] 2000). For the purpose of this assignment, the Person-Centred care [PCC] understanding, which highly values the personhood and dignity of the individual, will be compared and contrasted with the more recently developed Relationship-Centred understanding. Relationship-Centred care philosophy is closely linked with the PCC understanding and is philosophically and practically underpinned by it. Both understandings will be discussed with references to current evidence-based literature and seminal thinking and contrasted with the Medical Model understanding which has been influential also in care delivery. But because the Medical Model understanding originated first in history, this essay will initially explain and analyse it’s overall view and it’s ongoing influence.
The Person-Centred understanding will, however, be the main focus as it is a foundational modern outlook (Kitwood 1997). In the past, there have been, and there still are, many different and fluctuating views of dementia which have evolved. Hence, we have several alternative implications for care planning, the flexible operation of service delivery and national strategy, which have emerged due to all these eclectic blends of understanding.
In this essay, a critical analysis and attempted clarification of the given statement is presented which shows the potential complexity of ways of ‘seeing’ dementia that can co-exist together in services and in society, with or without harmony.
There will be an analysis of how this whole host of understandings impact and come together in a multitude of ways at the many different coal faces of caring, e.g. in nursing homes, day centres, specialist units, hospitals, education centres and in the community including the author’s own place of professional work which was, up to 2014, a specialist residential unit for people with dementias not amenable to care in nursing homes. ie. with severe BPSD (Behavioural & Psychological Symptoms)
What dementia can mean and signify in today’s context to different citizens and groups, e.g. people with Mental Health issues or Intellectual Disability, will also be outlined and critiqued, in an explanatory way, with specific reference to the present day Irish context and the recent development of an official national strategy in today’s fragile economy. (Cahill et al 2012 and ASI 2012)
The Medical Model understanding
The traditional Medical paradigm, or the Standard paradigm, as Kitwood (1997) authoritatively calls it, on the other hand, defines dementia as a neurological disease to be treated. In other words, a pathology. It focuses on the brain and the organic changes that occur in the brain as the main cause of dementia. It is seen as a treatable illness more than a disability.
Dementia is a generic name for many conditions where one’s mental faculties are lost over time. The World Health Organization [WHO] defines it as “A syndrome due to disease of the brain, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, learning capacity, language and judgement.” (WHO 1992) There is a variety of types and degrees of dementia. It is, of course, most common in more elderly people but can occur in younger people including those under 65 who do not qualify for publicly funded Gerontology services. One in three people over 80 years old will develop some degree of dementia (Alzheimher’s Society of Ireland [ASI] 2012). This is of great significance as the relative number of people of advanced age increases in Europe and, to a lesser degree, in the U.S.
Alzheimer’s type dementia is the most common condition. It accounts for up to 70% of all people living and dying with dementia (ASI 2012). Vascular dementia is the second most prevalent known cause. About 20% of people have a vascular contribution. Some dementias are of mixed origin. And there are several smaller sub-groups of dementia types of lesser overall statistical relevance. At least 60,000 people in Ireland are living with dementia today and this is expected to increase rapidly in the coming decades.
Care plans based on Biomedical models highlight problems that need to be addressed e.g. incontinence or aggression, rather than building on existing strengths e.g. retained long term memories, hobbies and interests.
The Medical model understanding emphasises ‘cure’ more than nurture or promoting ‘human flourishing’ as described by Brendan Mc Cormack (2012). In Palliative care this may lead to significant differences of opinion about treatment options at the end of life (An Bord Altranais [ABA] 2009). The Medical understanding, on its own, may not be appropriate e.g. in ethical decisions about resuscitation. (Purtilo 2011) It is beyond the scope of this essay to discuss these questions here. (Beauchamp 2009)
A positive strength of the Medical view is that it places dementia care in the mainstream of current treatments available e.g. using medication to ameliorate the condition with early GP intervention. It also holds out hope that the disease can be prevented, delayed or even cured some day by new therapeutic interventions. There has been public criticism in the media of over-reliance on medication especially in the UK with the NICE guidelines. The Medical philosophy has a crucial role to play in initial diagnosis of dementia which can be very helpful e.g. out-ruling other disorders such as tumours or thyroid problems with blood tests and scans.
In practice, there is considerable overlap between care based on the Medical model understanding and the PCC outlook and they complement each other quite well in reality and in current practice.
Modern care planning is often a blend of meeting immediate needs using the Medical understanding and enhancing life through Bio Psychosocial understandings (Sabat 2001) e.g. with music therapy, pet therapy, sing songs and reminiscence.
These are promoted actively by organisations such as Engaging Dementia (formerly called Sonas APC) This creative attempt to enhance life can give much satisfaction to carers. It can help to make the sometimes long endured and harsh experience of dementia and it’s ongoing long term care much more bearable.
The Person-Centred Dementia Care Understanding [PCC]
The Person-Centred care understanding – PCC – (Kitwood 1997) is mainly about caring for the ‘personhood’ of the individual with dementia. It focuses on individual needs, choice and personal dignity. It states that the experience of dementia depends on how the person with dementia is treated. It is dependent on the quality of the caring environment and, most importantly, the relationships of carers with the person with dementia. It stresses the interplay of interpersonal interactions more than physical elements of care. Kitwood’s philosophy historically derived in part from Rogers’ classic work (Rogers 1961) in the field of counselling and psychotherapy (Kitwood 1997:4). Rogers emphasised maintaining empathy and unconditional positive regard in person-to-person interactions. Interestingly, both Kitwood and Rogers had a strong Christian religious formation in their early lives and this may help to explain their enduring mutual appreciation of personal human dignity combined with great respect for personal freedom and choice which may have arisen from their own youthful experience of restricted personal liberty. (Kitwood 1970 in Baldwin 2007)
The concept of personal dignity is the main human value to be treasured and supported according to PCC theory. Selfhood needs to be maintained by good care. Good, supportive care can sustain the unique personhood and dignity of the person with dementia as Kitwood concludes (1997).
The literature of PCC talks a lot about the danger of ‘malignant social psychology [MSP]’. (Kitwood 1998 in Baldwin ed. 2007) It challenges debilitating, negative attitudes of carers and society to persons with dementia e.g. stereotyping. These attitudes, when entrenched, can obviously dehumanise and depersonalise the individual with dementia and may cause drastic deterioration of their mental, emotional and, even, eventually, their physical condition. (Kitwood 1997) This is the dark side of care in the world of dementia which has disturbingly come to light in recent years e.g. in the media coverage of the Lea’s Cross affair and other incidents (DOH 2009). This has, in a positive way, however, led to increased scrutiny by the Health Information and Quality Authority (HIQA) and the Mental Health Commission (MHC) of clinical governance in institutions. Standards of care have been raised significantly nationally but, perhaps, not at community level so far.
Depression can often ensue on poor care which can make the accurate assessment of the progression of the condition much harder to gauge. Clearly, depressive illness can exacerbate self-neglect. Depression can also commonly occur after initial diagnosis and disclosure, understandably. Low mood can hamper communication also and may lead to severe emotional withdrawal which can be very difficult to manage as witnessed at times in the author’s own long experience of working as a nurse with residents with advanced dementia.
The understandings of both Kitwood (1997) and Brooker (2007) highly emphasise basic respect and individual attention giving as in the attractive ‘VIPS’ model. People with dementia are ‘Very Important Persons’, as Brooker (2007) states. PCC theory focuses on the remaining abilities of the person with this disability. It is strengths-based in a similar way to care planning normal now in the progressive discipline of Intellectual Disability nursing. It encourages individuals to continue to be able to make choices and so enhances the sense of personal dignity/self-control.
The PCC theory aims to empower the individual whereas the Medical understanding can, perhaps, create over-dependency on the experts and professionals. PCC questions the reasons for agitated behaviours and ‘acting out’. It considers that behind such behaviour is an underlying attempt to communicate rather than being seen as a neurological problem to be dealt with or solved. It emphasises trying to understand the individual and their specific needs e.g. personal food preferences and intolerance of noise such as pop music or blaring televisions.
Ann Johnson, a UK nurse who had early onset dementia herself, and who spoke out courageously and publicly on behalf of people with dementia, emphasises the great importance she feels of being treated with dignity and respect and not stigmatised because of her condition. Johnson (in Sabat et al 2011) emphasises the need to be listened to, respected and understood and treated as an equal citizen with an equal voice, as a “whole person” (Sabat et al 2011). After all, Johnson wonders, who are the real experts if not people who themselves have received a diagnosis of dementia? (Sabat et al 2011)
Emotionally loaded expressions such as ‘demented’ people can be very demeaning (Sabat et al 2011) and such insensitive language increases the sense of stigma which prevailing negative cultural attitudes can engender.
On the other hand, speaking euphemistically or in an over-sanitised way about the experience of dementia may do an injustice to the real heartbreak, serious practical problems and unrelenting stress and work that dementia and it’s care can cause in daily life.
The renowned longitudinal Nun study in the US (Snowdon 1997) has shown conclusively that good care and optimistic living environments can considerably lessen the symptoms of dementia. This gives real grounds of hope for future care planning but illustrates how essential positive attitudes are. The general characteristics indicated by these blessed sisters’ lives seem to include good food, regularity, plenty of company and financial security. The study also suggests that convent life can be quite intellectually stimulating. This is a good example of what Kitwood describes where “the social psychology works to offset the process of neurological decline (Kitwood 1997 p50)
The short televised Youtube of Snowdon’s work ‘The Nun Study’ is very heartening and encouraging to carers and indeed, to families involved.
The Relationship-Centred Care Understanding
The Relation-Centred dementia care understanding (Nolan 2002 and Nolan et al 2004) involves the families and friends of the individual in the person’s care. It shows that ‘No man is an island’, as the poet Donne wrote (Appendix A), and that the social environment has a significant effect of the quality of life of the individual who has dementia.
At least 50,000 carers are involved in home care in Ireland today (ASI 2012). This is the real front line and can be the place of greatest strain if adequate supports are not in place. Where the main carer is supported by participation of family and friends, and backed up by public services, the burden of anxiety is greatly eased. Availability of respite care would, of course, be very helpful.
Early diagnosis of dementia is generally desirable so someone can be appointed Attorney to act for the person with dementia if and when they become mentally incapacitated. The law concerning capacity in Ireland has been changed (2015) and the old Ward of Court system is being replaced.
Whereas the Person-Centred care understanding emphasises the overriding importance of each individual, the Relationship- Centred Care philosophy goes on to put the citizen with dementia in the context of his significant relationships in society. It looks at the whole community of care and the social impact of dementia on family dynamics and community welfare.
Similar to the motto “It takes a village to rear a child”.
In an era of rapid social disintegration with many elderly people now living alone (Alone 2012), the Relation-Centred model has much to offer. Vulnerable people can contribute remarkably to the rebuilding of good neighbourliness by drawing out altruism from others in the community.
The PCC/Relationship centred and Medical model philosophies do differ in their emphases and priorities, though. This has real implications for care planning and actual service delivery.
Implications for Care Delivery
The allocation of resources is often controlled and dictated by the authority of the Medical profession, so ‘soft’ or personal care is not always funded adequately or promoted whereas millions go into drug budgets and, perhaps wasteful, medical tests.
In an era following global economic recession and radical cutbacks in Government spending on public healthcare, the most economical means of treating dementia will have to be sought out e.g. attempting to reduce drug budgets. This has determined Irish national strategy.
The present government’s stated policy is to favour community care over institutional care, e.g. nursing homes, but, conversely, there have also been cutbacks in home care packages which will place a much greater burden on families and informal carers. This inevitably, will have a knock on effect on an already over-stretched acute hospital system and A&E’s.
(2022 note) This was all greatly exacerbated by Covid since 2020.
Other Understandings of Dementia Care
Other alternative models and philosophies are also relevant in modern Irish Culture e.g. BioPsychoSocialPhysical (Keady et al 2012), Spiritual/Ethnic explanations (Uwakwe 2000) and Normal Aging paradigms. The many different understandings of Dementia can work together but they can also work against each other.
Keady et al (2012), in a new departure, adds in a physical element to PCC and this may help to broaden the care approach e.g. using exercise to maintain physical well-being and promoting healthy diet with essential nutrients such as Omega 3 EPAs (Fish oils) and Vitamins and filtered drinking water. (2022 note) Walking has be found to be definitely important.
Ancient cultures may traditionally have had a more accepting and peaceful view of aging and this places dementia in the overall context of growing old naturally and gracefully with community support. Less ‘developed’ countries may be slowly catching up with the West in terms of increasing age profiles and exponential breakdown of traditional family supports.
In PCC philosophy, it is a basic tenet that people with dementia do have a real and positive contribution to make, almost as an antidote, to modern Western society which can be often hyper cognitive, as Kitwood (1997) notes so enlightenly. People with dementia can live a simple, and often surprisingly content, emotional life unknown to our sometimes superficial, over-busy Western world preoccupied with celebrity status and high finance. (Post 1995 in Kitwood 1997 p 10)
My hard won personal experience with my own mother, Mary, bears this out (2022 note)
This positive realization will make for more enlightened care-giving and reduce incidences of elder abuse in time in the same way that children’s’ human rights have become more positively recognised in our time.
Interestingly, Rawling in her very popular Harry Potter books (1997 to 2007) series describes frightening characters known as ‘Dementors’, which could drain the life out of people. This taps into primitive fears of mental ‘death’.
There can be denial or taboo about discussion of dementia in the same way that cancer and mental illness used not to be spoken about publicly in Ireland. But this is changing, thankfully, due to excellent advocacy work done by, for example, the Alzheimer’s Society of Ireland [ASI] and occasional sensitive media coverage of high profile cases e.g. Florence, the late wife of Michael Noonan TD, former Minister for Finance.
Leadership and Strategic Planning
The pre budget submissions of the Alzheimer Society of Ireland (ASI) highlight the need for funding for Dementia Care in an era of government cutbacks in Public Health spending and the projected rapid increase in numbers of people with dementia. The “old old” as some call them.
Because of the scale of National debt arising from the Covid crisis, further Health care spending cuts are inevitable as recent publicized statements by the Minister for Health have outlined.
Vocal, persistent advocacy on behalf of people with dementia will be needed to ensure fair allocation of resources.
In this essay, the author has looked at many different ways of understanding dementia. Obviously, the myriad of ways that dementia that can be understood and defined could not all be covered. For clarity’s sake, the focus in this essay was on the two contemporary views of dementia now dominant in Western society, namely the Medical model/Standard paradigm and the Bio-Psychosocial models (Sabat 2011) including the classic Person-Centred model (Kitwood 1997) and the newer Relationship centred theory (Nolan 2004) and Keady’s Bio-PsychoSocial-Physical model (Keady 2012). The Person-Centred understanding, which the author considers to be eseentially central, was placed in context with other views which are evolving. The complex way that different people’s perceptions of dementia can weave together was also analysed and discussed e.g. the interaction of the one time dominant Medical model philosophy with other approaches and outlooks (Downes et al 2006). The implications of this whole rich brew of understandings for the practical delivery of care, including those existing in the author’s own roles and long experience, were analysed critically.
The urgent need for strong, dynamic and vocal leadership and the development of good strategies for the immense practical challenge that dementia care poses and will inevitably continue to pose for society, due to undeniably stark demographic realities rapidly oncoming, was also outlined. (Cahill et al 2012 and ASI 2013) The need to calmly raise public awareness of these issues by national debate, media work and persevering education was addressed. There is a need to counteract demographic scare-mongering about people with dementia becoming a drain on resources by revaluing the individual human being and all that our common humanity stands for as Pope Francis has repeatedly declared (Paul Wickham RGN – January 2013 and updated 2022)