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Dementia is a chronic, heterogeneous neurodegenerative disorder which develops as a function of age, typically from 65 years old, with symptoms ranging from personality changes and losses of memory/intellect to severe reductions in mobility. Alzheimer’s disease is the most prevalent form of dementia (Cooper & Greene, 2005). The diverse and deteriorating nature of the dementia process is uncontrollable and dramatically reduces suffers ability to care for themselves independently, resulting in the need to be cared for, predominantly by informal carers, constituting family members; particularly Spouses or children of the dementia sufferer. Consequently, the majority of dementia sufferer’s remain living at home (Rabins, Mace & Lucas, 1982). Undoubtedly the role of caring for a person living with dementia has negative psychological (Dura, Kiecolt-Glaser & Stukenberg, 1990) and social effects (Rabins et al.) on carers. However, amount of social support carers receive (Haley, Levine, Brown & Bartolucci, 1987), stage of the dementia process (Quinn, Clare, Pearce & Dijkhuizen, 2008; Haley & Pardo, 1989) and symptoms expressed (Kinney & Stephens, 1989) mediate negative psychosocial effects on carers. Psychosocial effects can be also be positive (Andren & Elmstahl, 2005), with gender mediation (Fitting, Rabins, Lucas & Eastham, 1986). Indirect causes of psychosocial effects on carers are financial strain (O’Shea, 2003) whilst effects of dementia on society also exist (Wimo, Ljunggren & Winblad, 1997).
Firstly, in relation to psychological effects on carers of persons living with dementia, research proposes behavioural symptoms expressed by dementia sufferers are the predominant cause of negative effects carer’s experience. Behavioural symptoms range from embarrassing public behaviour to self-harm, causing carers to be persistently aware of the dementia sufferer’s actions which subsequently induces psychological effects of stress, anxiety, emotional upset and fatigue on carers (Dura et al., 1990). The dementia sufferers’ argumentative temperament, violence towards carers and rejecting carers help also augments psychological stress and upset, with exhaustion as dementia sufferers often wake carers at night, augmenting further fatigue and thus stress (Rabins et al., 1982). In consequentially, following extensive periods of care (approximately 74months), psychological well-being of carers reduces dramatically with 30% expressing symptoms of depression, not existent prior to commencement of caring (Dura et al.). Implying, induction of negative psychological effects on carers are a direct consequence of caring for the person with dementia.
Secondly, caring for a person with dementia induces negative social effects on carers with an average 30 of 55 carers reporting feeling social-isolated as a consequence of fulltime care, due to restricted time available for social activities/friendships, to insufficient support from family members and also due to leaving fulltime employment, as the work place is a major basis for social-interaction. Considering, carers undergo these major life changes to care for the dementia sufferer it is not surprising they feel socially-isolated, especially when dementia sufferer’s communication abilities deteriorate (Rabins et al., 1982) and feel ultimately trapped (Gaugler, Anderson, Zarit & Pearlin, 2004). Furthermore, social effects on carers elucidate the relationship between caring for dementia sufferers and depression, as social isolation amplifies the probability of carers experiencing depressive symptomology. This is vilified by carers who receive social support, remain in contact with social networks and partake in social activities and consequently report absence of depression, reduced stress and augmented satisfaction (Haley et al., 1987). Thus, effects on carers of persons living with dementia can be psychological and social; psychosocial but appear mediated by carer’s social situation. The stage of dementia is also primary (Quinn et al., 2008)
Thirdly, severity of psychosocial effects on carers of persons living with dementia, appear determined by the stage of dementia. As Quinn et al. (2008) proposed negative psychosocial effects on carers are at their peak of severity during early dementia stages due to drastic changes taking place in carer’s lives, primarily, adapting to prevalent changes in the dementia sufferer and accepting changes in the relationship with the dementia sufferer with augment carers stress (Burns & Rabins, 2000). Conversely, Haley and Pardo (1989) proposed negative psychosocial effects peak during later dementia stages, specifically augmented stress levels and social isolation as carers role becomes increasingly demanding. Particularly, care of daily needs, such as feeding and clothing due to dementia sufferers declining immobility due to the deteriorating progression of dementia. Also anxiety augments with fear of the dementia sufferers looming death (Rabins et al., 1982). Moreover, it is comprehensible both early and latter dementia stages induce negative psychosocial effects on carers, although which stage carers perceive to account for the majority of negative effects relies on individual differences. Especially as some carers conversely report later dementia stages to reduce negative psychosocial effects as behavioural symptoms become less adverse which may, be easier for some carers to cope with. Furthermore, some carers even report satisfaction from aiding daily-needs of immobile dementia sufferers (Kinney & Stephens, 1989). However, older carers seemingly experience augmented psychological stress than do younger carers (Kiecolt-Glaser, Dura, Speicher, Trask & Glaser, 1991) whereas younger carers experience augmented social-isolation and rage, with all effects appearing worse for women (Fittings et al., 1986).
In view of these individual differences, two hypotheses are proposed to account for variability in psychosocial effects experienced by carers. The first;Wear and Tear hypothesis predicts; as symptoms of dementia sufferers worsen, so do carers stress and depression levels, subsequently affecting carer’s social life, inducing negative psychosocial effects which supports Haley and Pardo (1989) findings as suggestive of later dementia stages inducing greatest negative psychosocial effects on carers. Whereas the second;Adaptation-hypothesis predicts carers adapt to caregiving requirements and subsequently experience reduced stress and increased satisfaction over time, thus reduced negative and increased positive psychosocial effects on carers (Townsend, Noelker, Deimling & Bass, 1989). Accordingly, Townsend et al. indeed revealed the majority of adult-child carers; 52% (averaging 47 years old), actually adapted overtime to their caregiving role, supporting earlier dementia stages as inductive of the most negative psychosocial effects, which accounted for both centralized and non-centralized caregivers. Although relationship between carer-dementia parent prior to caregiving mediated whether adaptation or declination occurred. Nevertheless, deciphering which carers require support during early or later stages of dementia may aid alleviation of negative psychosocial effects on carers of persons living with dementia (Townsend et al.). Although positive, psychosocial effects on carers are also reported (Andren & Elmstahl, 2005).
Andren and Elmstahl (2005) report carers experience positive psychosocial effects, specifically, portrayals of positive behaviour and interaction with dementia sufferer is gratifying for carers. Particularly because interaction is gratifying for the dementia sufferer which positively enhances carer mood; decreasing negative psychosocial effects.. Although carers experiencing positive psychosocial effects appear to be those who perceive their caring ability positively and have established coping mechanisms such as talking to others about their feelings; emotion-focused coping and learning more about what dementia is; problem-focused coping/information seeking, particularly decreasing feelings of social isolation (Haley et al., 1987). However the carers Andren and Elmstahl assessed, received help from care nurses and only cared for the dementia sufferer around every two months, thus due to their limited involvement and supplementary support, it is not surprising carers reported augmented positive as compared to negative psychosocial effects. Further suggesting time involvement as mediating negative psychosocial effects on carers, especially as O’Shea (2003) reported two-thirds of carers working approximately 80 hours per week caring for the person with dementia; double the average working week, experienced caring to be highly stressful and felt substantial social isolation due to extensive time devoted to caring. Carers reported they would exhibit greater satisfaction by receiving supplementary support allowing reduced working hours, which therefore supports Andren and Elmstahl’s findings. Although, O’ Shea reported 73% of carers do receive support from formal carers, suggesting lack of support from family members causes negative psychosocial effects or formal carers being strangers may augment carer’s stress (Burns & Rabins, 2000). Even so, other variables require investigation, particularly financial cost (O’ Shea, 2003).
The cost of caring for a person living with dementia can be up to â‚¬630 per week and considering majority of carers leave employment or work fewer hours to care for the dementia sufferer; carers are reported to averagely lose â‚¬200 per week. Consequently, two-thirds of carers report financial difficulties especially as only 30% of carers receive carer’s allowance (O’Shea, 2003), thus inducing psychological stress due to financial strain. Furthermore, caring for a dementia sufferer at home saves society £6billion per year which stresses the high cost of dementia care being absorbed by carers which undoubtedly increases carer’s psychological stress. On-the-other-hand carers may merely desire recognition in the form of payment from society for their challenging role as a carer, as it seems stress is induced on carers due to feeling ignored by society (O’ Shea). Considering many carers stated that they would receive satisfaction from just â‚¬2.40 an hour, suggests recognition of carer’s duties with a small financial payment may convert negative psychosocial effects on carers to positive. Without this payment, society potentially face problems by inheriting the bulk cost of dementia care if carers struggle to cope and resort to early institutionalization of the dementia sufferer, which is reported to cost $166 per day in America (Wimo et al., 1997). On-the-other-hand, institutionalizations may reduce negative psychosocial effects on carers (Gaugler, Pot and Zarit, 2007).
Gaugler et al. (2007) reported alleviation of carers psychological stresses associated with daily aiding of dementia sufferers and social effects associated with social isolation due to constant care when dementia sufferers are placed in nursing homes. However these effects are reduced only temporarily as carers consequentially report psychological effects of guilt of institutionalizing the dementia sufferer, which suggests, even after their central role as a carer ends, psychological effects still remain. Although compared to nursing homes, group-living homes are designed to resemble the typical home and Colvez, Joel, Ponton-Sanchez and Royer (2002) found carers to experience less psychological stress associated with guilt when placing the dementia sufferer into group-living homes. Possibly because they are more sociable, granting dementia sufferer’s a better quality of life which feeds-back positively to carers. However this does not seem consistent for all carers (Boekhorst et al., 2008). Nevertheless, group-living homes may be an intervention to reduce negative psychosocial effects on carers. Interventions are also essential, particularly as co-existence of negative psychosocial effects on carers appear to enhance probability of physiological effects on carers such as ill health (Kiecolt-Glaser et al., 1991). Moreover, carers may benefit from training in how to effectively care for a dementia sufferer and knowledge of the nature of the dementia deterioration may make caregiving less stressful by increasing carers awareness and predictability of the dementia process (O’Shea, 2003). Personally, assigning a mentor to carers may teach effective ways of caring whilst simultaneously providing them with support, attacking both psychological and social effects on carers of persons living with dementia. Although individual carer assessments may be needed to ensure interventions are targeted at reducing the psychosocial effects particular carers experience (Rabins et al., 1982).
Overall, it is prominent that caring for persons living with dementia is a demanding role with various, predominantly negative psychological (stress and depression) and social effects (social isolation) on carers. Although there is no unified theory accountable for all carers which can predict definite psychosocial effects that will be experienced by all carers, as no single individual or situation is identical. Multiple variables have emerged which appear to mediate psychosocial effects on carers, particularly carers received level of social support (Haley et al., 1987), the stage of dementia (Quinn et al., 2008; Haley & Pardo, 1989) and the symptoms expressed (Kinney & Stephens, 1989). Although individuals adopting coping mechanisms appear more likely to experience positive psychological effects (satisfaction) and positive social effects (interaction with the patient) of caring for a person living with dementia. Although Indirect mediators; not directly related to the dementia suffer per se; financial cost of caregiving, induce stress due to financial strain. Future research needs to decipher carers at risk of experiencing negative psychosocial effects and subsequently address interventions aimed at reducing negative psychosocial effects to reduce probability of carers developing not only mental deterioration (depression) but also physiological deterioration (Kiecolt-Glaser et al., 1991).
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