Free research paper sample on Dementia:
It appears that the social construction of dementia has contributed to a substantial lack of knowledge, education, diagnosis, adequate care, support, love and understanding for both the carer and the sufferer.
The individual accounts throughout these stories contribute and expand on this theory and highlight the difficulty professionals have in diagnosing and dealing with dementia. In some cases unusual strategies were suggested like sixteen-year old Cathy being offered Valium to cope with her Dad’s illness. Others like Anne and also Beth’s mother were given anti depressants that made their condition worse and some, like Dorothy, were undiagnosed for two years. Vera felt ‘that there were not many doctors who understood’ (Naughtin and Laidler 1991:161) and Beth was told by her doctor that her husband was ‘just malingering and had wasted five years of his life’ (p.87) and were further advised by a psychiatrist that her husband do a gardening job. Not all blame can be attributed to medicos however as research points out that the initial stages can be confused with ‘ageing symptoms’ and furthermore ‘deliberately masked by patients or their carers’ (Gruetzner 1992:44).
The implications of no or misdiagnosis add more stress, distress and confusion to an already debilitating situation, further compounded by family and community ignorance. Beth’s son and Cathy were unable to bring their friends home not only for fear of how their parent would behave but because as Cathy explains her friends deserted her and ‘were afraid to come near our home’ (Naughtin and Laidler 1991:48). Vera found that she encountered a lot of denial from friends and relatives to a point where her daughter told her she was misinterpreting and ‘being paranoid’ (167). This was similar to Beth’s experience where she explains that she was shunned, by family and friends and abused after putting her husband in permanent care. Margaret, the professional worker explains how essential it is for service operators, family & friends and even neighbours to be supportive and understanding. She advises that professional’s impact on ‘the ability of carers to cope in these situations and that family, friends and neighbourhood support is considered in assessing if a sufferer can live at home’ (22).
Lack of suitable facilities or long waiting lists add further stress since many carers often don’t report their situation until quite late in the disease or when they in a coping crisis. Facilities that assess on the age of the patient meant that Beth’s husband, who was under sixty, was moved nine times in eighteen months. Since dementia sufferers need stability in surroundings this is most unsatisfactory. Some facilities do not cater for the wandering aspects of dementia sufferers raising further safety issues as Judith found with her mother.
Ignorance by professionals and the general population regarding this illness has further compounded in the treatment of patients in residential care. Kitwood combines the research of many professionals and his own observations at the enormous prejudices and misconceptions that have led to inadequate and often abusive care situations. He feels there needs to be a ‘cultural transformation’ and ‘vast training’ (Kitwood 1992:142) to combat past ignorance and that the ‘motives that have dominated our culture’, i.e. capitalism over humanism’ need to be re-evaluated to add dignity, respect, kindness in all aspects of dementia care (Kitwood 1992:143).
The labelling of dementia as ‘insanity’ may have contributed to the silence, labelling and misconceptions of the illness. Bert feels that if it had been called ‘progressive forgetfulness’ (Naughtin and Laidler 1991:99) the construction would be a lot different.
NATURE AND DIVERSITY OF EXPERIENCE
Some of the common threads throughout these accounts were that carers often masked symptoms of sufferers by filling in the gaps for them or altering schedules and expectations around diminishing capacity. This creates a complexity of issues that impacts on the immediacy of receiving help, of significant others knowing or recognising a problem or coping themselves until breaking point. Bert and Ern both covered up for extended periods for their wives, Bert didn’t know for six years what the problem was.
In the majority of these cases and typically, dementia presents as a slow and debilitating process with the sufferer unable to realise the affect their illness has on others. Memory loss, confusion and inability to make decisions mark the onset along with a withdrawal from answering phones and sociality and then loss of cleanliness and appearance. The illness seems characterised by a gradual reduction of all faculties with the latest information disappearing first until the sufferer reverts to childhood behaviours and experiences.
All of the carers in these accounts experienced guilt associated with looking after their loved one and finally relinquishing care even after it had been long and harrowing. Ern’s questions reflect all of the carers agony, ‘could I have hung on a bit longer? Did I do the right thing? Will she be given enough loving care? (120) His misgivings give further collective voice. ‘There were feelings of guilt and grieving at the loss of a loved one, though I had had them since the effects of the disease made it apparent that my smart, loving, meticulous girl was no more and could not remember being married to me nearly fifty years before or even what my name was? (120) Margaret aptly called these feelings ‘ the funeral that never ends’. (21)
Carers find these emotional losses devastating with the ongoing tasks relentless, exhausting, frustrating, consuming and often unrewarding. Decline in function often means changing clothes all day long, accusing the carer of stealing etc., confabulating stories, walking and wandering, up and down all night and eventual loss of control over bladder and bowel function. Carers largely experience a change in role, the need to assume power of attorney and an enormous need to employ flexibility in dealing with the sufferer. They face further moral & ethical dilemmas constantly as their loved one declines ‘ telling the truth, keeping promises, preserving dignity, safety vs. independence and the most difficult – the familiarity of home versus institutional care’ (Lindemann Nelson 1996:21).
Although gradual decline is most common some of the carers like Joan, Beth and Meg experienced sudden and rapid changes. Others like Anne, Beth with her husband and Robert had to deal with paranoia and aggression. Pauline and Beth’s husbands developed dementia while they were quite young and were unable to maintain employment immediately. Joan had to deal with instant loss and change after Henk’s stroke during an operation.
SIGNIFICANCE OF GENDER AND CLASS
The major gender issues with dementia are that in a majority of cases women are the one’s giving care. Even though in these stories there are numerous accounts of husbands looking after their wives, women may also have to care for a parent. Feminists may claim that this is why there are still inadequate care and facilities and that a woman giving up a career is not viewed with the same significance. Women fill the majority of nursing, social work and caring positions in our society. Where this is particularly difficult is that a woman may have been able to resume work after child raring and then find herself back in a child caring role for a parent. Prejudices and labels compound problems with a psychiatrist thinking Beth a ‘bossy woman’ after she had by necessity taken over all of the decisions. (Naughtin and Laidler 1991:86)
Class issues become significant in the capacity to afford care and assistance plus adequate facilities for the sufferer and also supports for the carer. Research links ‘the well being of the person with the disease and their capacity to live in their own home’ (200) as a major benefit, so being able to afford that is significant. Familiarity and routine are also important issues to the sufferer.
DEBATES RELATING TO PREVALENCE, ETIOLOGY AND EFFECTS
Much has already been said regarding etiology and effects. The prevalence of dementia in the past cannot be measured, but many carers after diagnosis, remembered other family members, friends or acquaintances that had obviously been sufferers but had been locked up as insane.
Debate exists regarding whether a patient should be told about their illness. As previously explained Les was ‘relieved to know’ and others throughout these stories indicate that there is a definite understanding that something is not right. Barbara’s mother was aware of her memory loss and remarked while enjoying a visit to the beach ‘it is awful, I won’t remember that I have been here’ (73). Dorothy remarks ‘I’m upside down and inside out’ (117). It is obvious that sufferers benefit with being treated with as much dignity and respect as possible and with a concentrated effort on what they can do to try and keep self-esteem in tact. Having an understanding of a patients history vastly assists in understanding current behaviour. Les explained his dismay at attending a meeting of carers where he felt ‘branded and overlooked’ (153). He could not understand why he was not listened to and that the needs of the patient were not considered. Kitwood further emphasises the need for a ‘new culture’ of thinking and respecting the psychological needs of dementia sufferers. He feels that there needs to be a strong move from tranquillising for minimal interaction to focusing on ‘not pathologising, not reducing to simplistic categories – rather concentrate on uniqueness, respectful about past and accomplishments and compassion to what is being endured’ (Kitwood 1997:135). No doubt all concerned throughout these accounts would have benefited incredibly from such an approach.
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