Dementia is one of the leading causes of nonfatal disability in the developed world and by 2030 it is predicted that dementia will be the third leading cause of the years of life lost due to death and disability .Measured using the concept of disability adjusted life years (DALYS) which combines a measure of the average years of life lost due to disease with the years lived with disability Mather’s and loncar (2006). Alzheimer’s society describes dementia as a term used to describe various different brain disorders that have in common a loss of brain function that is usually progressive and eventually severe there are over 100 different types of dementia. (All Parliamentary party groups on dementia 2009) reports, there are approximately 700,000 people in the UK today with dementia. That number will double up within 30 years and the financial cost of the dementia today is more than the cost of heart disease, cancer and stroke combined. In global burden disease WHO( 2003) it was estimated that disability from dementia is higher than almost all conditions with the exceptions of spinal cord injury and terminal cancer .Dementia is a health and social care challenge of scale, we can no longer ignore it and government recognized this with national dementia strategy for England in February( 2009). Dementia is a significant life changing process affecting everyone in different ways .Different type of dementia affects individual people differently. My case study is about Mr. Roy who is diagnosed with Fronto temporal dementia who has progressive language loss and cognitive decline. As he suffers from primary progressive aphasia, all information gained from his wife .Jane. [I have changed all names of persons and places to protect confidentiality as followed by NMC guidelines.]
Mr. Roy was a supervisor and driver for a company for 35 years, dedicated employee, he married Jane and had four children. Roy’s mum has history of undiagnosed psychotic problems. He always had abrupt mannerism, strict with everything and always wanted to be first. Although he was dedicated to his job and never had time for his family, Jane was the main carer of the family. She worked as manager of a residential home .She says that he never been there for my children. Roy was a lovely person when he married her, after she had four children, he was working as a supervisor for a company for 35 years. Roy lost his job when he could not accept the changes in work environment, when the company started to use the modern equipments. He started to behave inappropriately, he collected office documents and kept it on the top of the attic, as he does not like Changes Company’s policies .He lost his job as this company moved to another place. He lost interest in his family life; he spent time in pub and always had temporary lady friends and spends money for them, which always leaded him to have debts and borrowed from banks and building society, without knowing his wife. His wife had to face the summonses, bills and police cases for a long time. She continued to pay back .He had problems with managing accounts, records and names of children. Roy started to be very rude and argumentative pressure on his wife for money and spent it treating others in the pub. He had lots of temporary lady friends; his personality changed, he threatened his wife with a gun one day to find his way. His driving skills became poor, and he had a car crash but survived miraculously. He never mentioned with his car after this incident. Mr. Roy then isolated himself .He use to visit regularly to the place where the company was and travelled several times in a bus on the fixed route. He has been referred to the psychiatrist and diagnosed of anxiety, depression and he refused to undergo any treatment for 3 years. His condition become worse .Roy’s memory deteriorated. He admitted to the hospital due to his difficult behaviour pneumonia Mrs. Jane had to take voluntary retirement due to financial commitment and to look after Roy. Her daughter was very supportive to her other three children hated him, and never bothered about their dad. Roy then sectioned due to his difficult behaviour admitted in mental health unit, undergone a CT scan and diagnosed of Fronto temporal dementia. He moved to an EMI nursing home to manage his complex needs. Roy displays physical aggression both actual and threatening. Roy says “do you want two black eyes.” He will raise his fist and will attempt to slap the staff’s faces. Roy’s inhibitions appears reduced which often results in socially inappropriate behaviours .Physical aggression towards fellow residents, Roy appears to have no insight to his own condition on others illness and safety. Roy is at high risk of absconding and has a past history of windows and absconding from the previous care settings .Roy is self neglect ,resistive towards personal care , his behaviour can be challenging when staff approach him regarding personal care .He has no concept of risk to himself or others ,he will invade people’s personal space and can become confrontational regardless of any age groups .When people ask Roy questions he will laugh inappropriately, mimic ,or answer inappropriately ,for example ‘don’t be stupid .His short term memory appears impaired to the place and date .Long term memory appears impaired and muddled . Roy believes that he was in the Navy, but his wife has told that this was incorrect .Some aspects of Roy’s long term memory are intact and he is able to recognize family members He likes to wear coat and tie all the time .Conversational skills are limited and superficial in style therefore further mental health assessment are difficult. Roy likes music and will play loud music with no concept to others. When his mood lowers Roy has a tendency to socially isolate himself ,He is currently prescribed antidepressants and his mood currently appears stable ,he has a sweet tooth , can be very demanding for particularly chocolate éclairs .He tends to get chest infections recurrently.
Common causes of dementia are Alzheimer’s disease ,vascular dementia ,Korsakoffs syndrome ,Dementia with Lewy bodies Fronto temporal dementia ,Creutzfeldt Jacob syndrome ,Aids related cognitive impairment ,other rarer causes like Progressive Supranuclear palsy, and Bins angers disease. People with multiple Sclerosis, motor neuron disease, Parkinson’s disease and Huntington’s disease can also at an increased risk of developing dementia.
Younger onset of dementia is arbitrarily defined as beginning before the age of 65 years. It is much rarer than late on set of dementia (Harvey, 1998) the proportion of those with Fronto Temporal Dementia is thought to be higher in younger-on set group than among older people developing dementia. (Dale2003; Williams 2001) possibly posing stresses for family members. In addition , the social and psychological context of younger people with dementia is different from that of older people (Cox and Keady,1999; Tined all and Manthrope,1997)The term Fronto temporal dementia covers a range of condition including picks disease and dementia associated with motor neuron disease all are caused by damage to the frontal lobes and the temporal parts of the brain, these are responsible for the emotional responses and language skills Alzheimer’s society (factsheet404)explains the core features of FTD as defined by the Neary criteria are early decline in social and personal conduct, emotional blunting and loss of insight. Selective brain degeneration is seen in dorsolateral orbital and medical frontal cortex (Neary).Personality shifts in the direction of submissiveness are typical for FTD. Although extroversion can emerge in previously introverted individual s(Rankin, Kramer, Mychackand Miller(2003) points out that there is a shift from the warmth to coldness on personality scares .Changes in established religious or political believes and patterns of dress suggesting changes in the sense of self are common, respect for personal boundaries disappears, some patient stare and become overfriendly, taking openly to the strangers(including children),Increased trust for others make these patients vulnerable to financial scams or sexual exploitation. Indiscretion causes embarrassment to the family and disinhibited verbal outbursts or socially inappropriate behaviour is common. Miller (1997) describes the symptoms are Antisocial behaviours, often reflect poor judgement and impaired impulse control. Impairment in personal conduct is a core feature .Some can be overactive with verbal and motor activities .where as others become inactive and withdrawn, some patients will fluctuate between over activity and apathy. Gregory and Hodges (1996)Kean Kalder, Hodges and young ,(2002),Rosen et al,(2004)Loss of concern for others and prominent emotional blunting tend to isolate the patient .A consolation of cognitive and emotional changes tocontributeto this emotional blunting .for example ,comprehension and expression .are deficient , and the inability to comprehend the emotions that others are feeling. That the others are feeling particularly better, negative emotions contributes to the feeling that the patient is no longer concerned about his or her loved ones, in addition, patients become self centred and tend to focus on their own particular needs and desires. In a medical crisis setting, patients may respond with inappropriate lack of concern , sometimes in a bizarre manner (Johansson & Hagberg,1989;Kramer et al: 2003) loss of executive functions leads to impaired multi tasking , shifting abstracting , making sound judgments , planning and problem solving the executive problems can be the first manifestaon of std proceeding behavioural deficits ( lindauetal ; 2000) poor performance at jobs leads these patients to get fired , and they tend to work at progressively simpler occupations. Similarly, catastrophic financial loss due to poor decision making is common prior to presentation at the physician’s office (miller 1995) explains that preservative and stereo typed behaviours emerge in the middle stages of FTD, simple repetitive motor or verbal acts such as lips making, hand rubbing or humming are common. More complex behaviours such as collecting (garbage, rocks, stamps, plastic figures) wandering a fixed route or counting money, evolve in patients. Hyperorality manifests in over eating and changes in food preference to a certain type of food or even conception of inedible objects. Analysing this behaviour characteristics Mr Roy is exactly the same features we can see in him .Roy’s challenging behaviour can be the signs of distress anger, aggression anxiety, and withdrawal .As ( Kerr and Cunningaham2004 ) states that it is difficult to determine how person respond to the behaviour or responses of a person with dementia ,if we do not know what caused it for and how person interprets it .As Roy has a rare form of dementia with primary progressive dysphasia
Patient with FTD also go on to develop speech and language problems during the evolution of disease, (Neary 1998 Pasquier, Lebert, Lavenu and Gallium, 1999).
Depression occurs and many patients with FTD are diagnosed with depressive disorders before dementia is evident (miller 1991) depression has atypical features that are a clue to the real diagnosis. Loss of insight regarding behavioural changes, diminished empathy for others, denial of depression, changes, diminished empathy for others, denial of depression, apathy, and blunted affect are present, in many patients with FTD and depressive features. Psychotic features, such as delusions and hallucination, occur but are infrequent. Deficits in working memory, set shifting and generation are evident, episodic memory deficits can be prominent, leading to misdiagnosis of AD. (Lindau 2000) (Miller, Swartz Lesser, & Darby, 1997) states that excessive smoking and alcohol or drug abuse can lead to the misdiagnosis of alcohol or drug addiction, patients with FTD tend to overeat in gluttonous manner. In clinical practice because many physicians are unfamiliar with its specific features FTLD is commonly misdiagnosed as AD. Decline in social and personal conduct, emotional blunting, loss of insight and progressive speech disorder develop early in the FLTD.
(Dawn Brooker 2007) points out that understanding person’s past history is crucial to providing person centred care, by looking at procedures for how key stories are known about and how these are communicated Person with dementia is central to this process although others such as family or professional carers can also derive considerable benefits from being involved . The process and its tangible outcomes assist communications and aid the development of positive relationships, Life story work therefore has a multiple benefits for various people. It is and activity that all the largely about the past, takes place in the present .it involves a series of intensive, non threatening highly personal discussions between the person disabled by dementia and responsive appreciative listener .As Roy’s dementia has progressed and is unable to gain any information from him . Cunningham (2006) Lack of awareness and knowledge about the needs of the patients with dementia can lead to challenging behaviour and misinterpretation of their needs. The ABC analysis of behaviour is a useful successful tool for understanding patients with Dementia. This system provides an opportunity to record all the factors which interact to create a challenging situation. (Wang and miller 2006) points out that many aspects of this disorder make it particularly troublesome for caregivers, including loss of empathy for others, apathy, diminished insight and inappropriate sound behaviours that characterize these patients. It can be argued that successful caring relationships are those here the person with Dementia is accepted just for what they are, not pressurised to become what they once were an impossible target for them to achieve.
Kitwood was the first writer to use the term ‘personhood’ in relation to people with dementia, he defined personhood as a standing or status that is bestowed upon what human being by other, in the context of the relationship and social being .It implies recognition, respect and trust. Brooker (2004) helpfully encapsulates the person -centred frame work in four areas valuing the person with dementia and those who provide care for them.(V)The individuality of each person with dementia ,(I),The important perspective of person with dementia (P) and the key role played by persons social environment person centred care involves the integration of these four elements. So the people with dementia and those who care for then truly seen as VIP`s.
A senses frame work has been proposed by Nolan as a of understanding these triangular relationship between the person with dementia ,the relative and the care home staff .Six senses are highlighted .those are – sense of security ,sense of belongings ,sense of continuity ,sense of purpose ,sense of achievement and sense of significance .For person with dementia living in a care home the two key sets of triangle relationship are first ,with family members and friends and second, with various members of staff provide care .the relationship with family and friends is vital in the context of the persons journey through life; the relationship with staff is vital in relation day to day comfort and satisfactions needs .Nolan et al argues (2003;2006) argue that these six senses are essential for the relationship that are mutually satisfied for all concerned .for each of six areas ,the person with dementia ,family member and care worker may experience this differently ,yet a gap in any of these areas will adversely affect the quality of relationship.
(Woods ;Keady; b’seddonch ;Diane 2007)explains that the person with dementia may feel secure and safe when he or she has a friendly smiling faces around, and physical needs are responding to promptly and gently (the family member may feel secure when she or he feel confident that the person is in good hands . and receiving good care .the care worker may feel secure when their job is not under threat . when they do not feel criticised and scrutinised for every action, and when they do not feel under threat or attack, whether physical or verbal. A study by CSCI (2008) of care homes has shown the quality of care staff, communication with people with dementia has a major impact on their quality of life .leadership ethos, of care home staff training; support and good development are crucial factors in supporting good practice.
Jane hated Roy because his difficult behaviour and the stress she had before diagnosis. G.P`s were not aware of this dementia as it is rare form of dementia ,.A fundamental way facilitating carer’s involvement, is for the nurses and the carers to negotiate a relationship within which involvement can operate in a way that endorses the principles of good practice is already established .Walker. E and Jane, B (2001)
Fronto temporal lobe degeneration strikes at relatively young age, so the disease often causes dramatic economic and social consequences before patients arrive in the clinic. The UK National service frame work for older people states that there should be specialist services for the younger people with dementia[DOH],(2001)National service frame work for long term Neurological Conditions advices that there should be person centred services ,early recognition ,prompt diagnosis treatment and early rehabilitation(DoH,2005)
When Jane had to face the consequences of the challenging behaviours financially and emotionally for long periods as she was not getting enough help from the health professionals ,and lack of diagnosis and unaware of his type of dementia .the person with dementia will adjust with this naturally ,but it can be much more difficult for their loved ones, since they are distressed by what they lost .
Miller and Wang (2003) Typical and Atypical antipsychotics have been used for controlling aggressive and psychotic symptoms. However considering the possible adverse response with deteriorating motor symptoms and dysphasia, antipsychotics should only be used as a last resort.
An increasing number of structured or therapeutic activity-based interventions exist for people with dementia. Examples include reality orientation; cognitive stimulation therapy; music therapy; art, writing, dance and movement; drama; aromatherapy and sensory stimulation; intergenerational programmes Montessori-based methods; doll therapy; the SPECAL approach; emotion-oriented care; horticultural therapy and woodlands therapy. Reviews have revealed that the research evidence for most of these activities appears weak, however the visible positive effect they have on individuals and anecdotal evidence indicates that they are worthwhile and have
Kerr D. Cunningham c(2004)Finding the right response to people with Dementia .Nursing and residential care .6,11, 539-542.
Harvey R.J (1998) Family Burden young onset of dementia Epidemiology, clinical symptoms, support and outcome London Imperial College.
Walker E. & Devar B.J. (2001) issues and innovations in Nursing Practice .How do we facilitate carer ‘involvement in decision making? Journal of advanced Nursing 34(3) , 329-337.
The above study thus explains the severity of Dementia and its consequences if left unattended. As stated above the number of people getting affected by this disease is increasing at a very high rate. Thus this disease seems to pose a serious threat to mankind and its social existence. The time has come to commence large scale studies and experiments on this disease and thereby device a methodology/cure for this. Also WHO should promote awareness about this disease among common public to ensure early detection and thereby reducing further health risks.
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