DEPRESSION IN CARERS OF PATIENTS WITH DEMENTIA
Aadil Jan Shah,Senior SHO Psychiatry, Gwent Health Care NHS UK,
Ovais Wadoo,SHO Psychiatry,Sheffield Health Care NHS UK.
Dementia is a progressive disease and those who suffer with dementia gradually lose the ability to live independently without the assistance of others. The majority of patients are cared for by family caregivers and these individuals are placed in a situation of escalating personal demands.
Caring for an elderly person with dementia is a major life challenge and it entails emotional, physical, social and financial burden (Morris 1998).It also has been described as one of the most difficult situations encountered by caregivers(Teusing JP,Mahler S.,1984).
Caregivers of dementia patients can experience various emotional problems during the course of the illness (Rabins PV.,1984).One such disorder, that is frequently overlooked and not treated, is carers depression (Harwood,et al,1998).It is well documented that family caregivers of persons with dementia have significantly more depressive symptoms than age and gender-matched non caregivers(Gallagher,et al,1990).Caregivers of persons with dementia report more emotional strain and depressive symptoms than caregivers of persons who are not demented (Hooker,et al,1998).Prevalence rates for depressive symptoms among caregivers of persons with dementia are reported to range from 28% to 55%(Schulz,et al,1995)
Zarit and colleagues were among the first researchers who highlighted the burden of providing care to a relative with dementia (Zarit et al.1980).Following this study, there has been an explosive growth of care-giving research, focussing on the negative effects of providing care on carers and on interventions to reduce or prevent these effects (Schulz et al.1995).The stress of carers is an important issue for public health care, because of their central role in the care of persons with dementia and the negative health consequences they may experience (Duijnstee,1992). Its importance gains prominence,due to the expected increase in numbers of elderly persons with dementia and their family carers (RGO 2002).
High levels of depression are found in individuals providing care to persons with dementia or Alzheimer's disease. Caring for an individual with Alzheimer's disease or a related dementia can be challenging and, at times, overwhelming. Such stress and frustration with its impact on carers physical and mental health can set a scene for potential abuse.
This essay presents a study of the literature on this mental health issue, mainly focusing on the factors responsible for caregiver’s depression, ethnic, cultural and gender differences, enhancing caregiver health strategies used for coping and related abuse.
A computer literature search was done covering the period 1982 to 2005 on PsychINFO and CINAHL database. Key words used were (combinations of): depression, dementia, Alzheimers disease, Caregivers, Caregiver burden. I also used Google search and text books as reference.
THE CORE PROBLEM AND ITS DEMANDS
Dementia is not merely a memory problem as indicated by the World Health Organisation definition 1986 :
Dementia is the global impairment of higher cortical functions, including memory, the capacity to solve the problems of day-to-day living, the performance of learning perceptuo-motor skills, the correct use of social skills and control of emotional reactions, in the absence of gross 'clouding of consciousness’.
Dementia presents a significant burden for both formal and informal care sectors. There are estimated 700,000 people with dementia in United Kingdom and of these up to 55% or 385,000 have dementia attributable to Alzheimer’s disease (AS 2003).
The prevalence of Alzheimer's disease is projected to more than triple in next 50 years (Hebert et al.,2001),generating substantial burdens on both the formal health care system and family caregivers who typically provide most of the direct care. Caring for a relative with dementia appears to be associated with adverse effects on caregivers health and some have referred them as "hidden victims" of Alzheimer's disease (Zarit,Orr & Zarit,1985).
Most dementing illnesses are progressive, and early symptoms and problems differ markedly from those in later stages. This may simply be a matter of degree. Other symptoms and problems usually develop later in the course of the illness.
In the moderate stage of dementia, the dementing person often requires some level of support from other individuals to enable them to maintain their function. It is often in this stage that carer’s begin to realize the full extent of the various demands upon them. While the deteriorating memory function is a problem, it is usually not the main feature that impacts upon the carer. It is more often the personality and behavioral changes that cause the most concern, having the greatest effect on those carers who live with the dementing person (Draper, 2004).
Support systems may be informal and formal.
Informal carers are family members who care for their demented relatives. Families remain the first, most reliable and most acceptable source of assistance. There are about 5.7 million people providing some hours of informal care (ONS 1998), the majority of which will be caring for elderly or disabled people. Of these, about 800,000 people will provide unpaid care for 50 hours a week or more. A sizeable proportion of these informal carers will be caring for a person with dementia.
Most families would probably prefer to look after their disabled relatives for as long as possible at home. However, because dementia is such a slowly progressive condition, by comparison with illnesses such as cancer, the time frame over which care needs to be provided is very long. Without a strong community care system, most families and other carers are hamstrung in their efforts to look after the person with dementia at home (Draper, 2004). Furthermore, informal carers often facilitate the linkages with formal providers, such as physicians, hospitals, community long-term care services, and nursing homes (Pearlin,1993).
Formal or professional caregivers include trained nursing staff, hospital staff, professional staff involved in home support, and untrained care staff within residential and nursing home facilities.
Most people with dementia will be placed into residential or nursing care in the moderate—severe stage of their illness, despite the efforts of family carers and community support services. Placement into a residential or nursing care facility is often a very stressful process for both the dementing person and the carers (Gruetzner, 2001).
HIGH LEVEL BURDEN LEADING TO DEPRESSION
Caregivers provide assistance with activities of daily living, dealing with incontinence, feeding and mobility. The majority (73%) of Alzheimer’s disease caregivers age 65 and over provide high levels of care. These caregivers are twice as likely to report physical strain and high levels of emotional stress as a direct result of care giving responsibilities. Consequences of caring for someone with dementia may also include the loss of companionship and support of a life partner (Moritz 1989) and the detrimental effects of caring on the carer's health (Chenoweth 1986; Haley 1987).
Due to high burden and responsibilities caregivers experience poorer self reported health, engage in fewer health promotion actions than noncaregivers, and report lower life satisfaction(Acton,2002;Amirkhanyan & Wolf,2003;Burton et al,1997;Danhauer et al.,2004,Ory et al.,1999;Schulz et al.,1995).
Family caregivers who have a significantly depressed mood may be adversely affected in their ability to perform desirable health maintenance behaviour or self care behaviours in response to symptoms(Yvonne&Mary,2005). Family caregivers experience more physical and mental distress than non caregivers in the same age group(Amirkhanyan & Wolf,2003;Schulz et al.,1995).
Informal caregivers of individuals with AD (Alzheimer’s Disease) are one of our health care system's greatest resources,and their task is not an easy one being fraught with psychological stress and physical exhaustion(Cohenetal,1990; Grafstrom,Fratiglioni,Sandman,&Winblad,1992;Vitaliano,Russo,Young, Teri &Maiuro,1991).
The vehicles of psychological stress has been conceptualized as adjustment to change (Holmes and Rahe, 1967), daily hassles (Kanner et al., 1981), and role strains (Pearlin, 1983).Lazarus and Folkman (1984) define stress as “a particular relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well being”.
The burden and depressive symptoms sustained by caregivers of AD patients have been the two most widely studied care giving outcomes.
The association between feelings of burden and the overall caregiver role is well documented (Deimling, Bass, Townsend, &Noelker,1989 ;George and Gwyther, 1986;Pratt, Wright,&Schmall,1987;Zarit, Todd,&Zarit ,1986).Several studies suggest that caregivers of dementia patients are significantly more likely to be depressed than are noncaregiver controls (Dura,Stukenberg,& Kiecolt-Glaser,1991;Haley et al., 1987b;Kiecolt-Glaser et al., 1991;Russo,Vitaliano, Brewer,Katon,& Becker,1995 ). Reports indicate that depressive symptoms are twice as common among caregivers than noncaregivers (Baumgarten et al., 1992;Canadian Study of Health and Aging Working Group, 1994b).
Several studies suggest that many caregivers are at risk of experiencing clinical depression (Gallant & Connel., 1997; Schulz &Williamson, 1991; Williamson & Schulz, 1993). Nearly half of the caregivers in some studies were reported to meet diagnostic criteria for depression when structured clinical interviews were used (Cohen & Eisdorfer,1998;Gallangher,Rose, Rivera, Lovett, &Thompson, 1989).There is also some evidence to suggest that a diagnosis of depression can be causally related to the caregiving situation. Dura et al 1991, found that nearly one quarter of caregivers met the criteria for depression whilst in the caregiving role, although they had never been diagnosed with depression prior to their assumption of this role. The societal implications of this are underscored by reports indicating that the stressed caregiver is more likely to institutionalize the care recipient (Cohen et al.,1993; Colerick & George, 1986; Haupt & Kurz, 1993).
Covinsky et al.concludes appropriately, that"efforts to identify and treat caregiver depression will need to be multidisciplinary,consider the cultural context of the patient and caregiver, and focus on multiple risk factors simultaneously."
RISK FACTORS LEADING TO CARER’S DEPRESSION
Prevalence of depression among caregivers of people with dementia has been estimated at between 40 and 60% (Redinbaugh et al.,1995) which contrasts sharply with 8% reported in non-caregivers of similar age (Blazer and Williams, 1980). Recognition of risk factors or characteristics that may facilitate or are associated with the disease process is therefore crucial.
There is overwhelming support for the claim that a higher frequency of behavioural problems presented by the patient is associated with an elevated level of caregiver depression and burden (Bedard, Molloy, Pedlar, Lever, &Stones, 1997). The frequency with which behavioural disturbances are manifested by the patient has been identified as the strongest predictor of caregiver distress and plays a significant role in the caregivers decision to institutionalize the patient (Cohen et al.,1993)
The literature consistently demonstrates that the frequency of behavioural problems is a more reliable predictor of caregiver burden and depression than are the functional and cognitive impairments of the individual (Coen et al.,1997; Pruchno & Resch, 1989a; Williamson & Schulz , 1993). Carers face unfamiliar and unpredictable situations, which increases stress and anxiety. Anxiety may be increased by behavioural problems of the demented patients who cannot be successfully managed on a consistent basis. Anxiety is associated with depression, stress, and physical ill health.
BPSD(Behavioural and Psychological Symptoms of depression) are associated with patient distress (Ballard et al.,1995a;Gilley et al.,1991),and are perceived by caregivers as the most difficult symptoms to manage (Rabins et al.,1982).BPSD adversely affect the patient caregiver relationship (Deimling & Bass,1986).Caregiver distress is particularly associated with aggressive behavioural disturbance (Clyburn,Stones,Hajistavropoulos,&Tuokko,2000). BPSD therefore results in the increased level of caregiver burden leading to depression. Not all changes of behaviour are a problem. Often an explanation that the behavioural change is part of the dementia allows the carer to tolerate it. At other times the behaviour itself is not abnormal, it is just occurring in the wrong place or at the wrong time (Draper, 2004).
Family caregivers of the persons with dementia assist with tasks of daily living over an extensive period of time. Physical and functional impairments in dementia patients may increase the difficulty of providing physical care and may be more distressing, for older family caregivers, particularly spouse caregivers (Connell,Janevic&Gallant,2001).
Findings regarding the relationship of functional impairment and negative caregiver outcomes have been inconclusive. Some studies document a weak association of objective measures of patient functional status and caregiver burden/depression (Kiecolt-Glaser et al., 1991; Russo et al., 1995), whereas others report a stronger relationship (Baumgarten et al., 1992; Gallant & Connell, 1997).
Joshua R.Shua-Haim and colleagues identified three patient factors were found to have a strong association with Alzheimers caregiver depression, which are:1)Depression in dementia patient;2)ADL functional scores of 12 or greater; and 3)the presence of hallucinations.
Risks for carer depression are related to gender, age, health status, ethnic and cultural affiliation, lack of social support, as well as certain other characteristics related to the caregiver (Gruetzner, 2001).
Gender: Women have higher rates of depression than men in the care giving role (McGrath et al., 1992). These gender differences in levels of depressive symptoms and depression may be due to variations in stress exposure, coping responses used, the role of social support (Billings and Moos,1984) and biological factors (McGrath et al., 1992). The literature on gender differences in the psychological well being of caregivers points to the increased risk for females in terms of depressive symptomatology.
Schulz and Williamson (1991) found that 39% of female caregivers, compared to16% of male caregivers, qualified as being at- risk for clinical depression on The Center for Epidemiologic Studies-Depression Scale (CES-D). AD caregivers reporting symptoms of depression have ranged from 28% to 55% and female caregivers were more likely to experience depressive symptoms than male caregivers (Schulz et al., 1995).
In a systematic review of gender differences and caregiving, Yee and Schulz (2000) showed that women caregivers reported more psychiatric symptoms than men caregivers, including greater depression (Beach, Schulz, Yee, & Jackson(2000), burden (Lutzsky & Knight,1994), and anxiety. However, few studies have examined the relationship between gender and intervention effects. In a randomized controlled trial (Gitlin et al, 1999) found that women were more likely than men to comply with a home environmental modification intervention, implement recommended strategies, and derive greater benefits.
Thus,In general, female carers seem to suffer higher levels of distress than male carers. How can this be explained? Certainly, women in societies are more likely to be thrust into the caregiving role than men. Female carers are also more likely to be ‘hands-on’, that is, they tend to do everything themselves rather than delegate to others. Male carers tend to have more of a ‘managerial’ style that allows them to distance themselves from the stressful situation to some degree by delegating tasks (Draper, 2004).
Age: Age-associated impairments in physical competence make the provision of care more difficult for older caregivers. Lawton et al. (1992) found a positive association of age and caregiver burden in Whites, but a negative association for African Americans, suggesting that older African Americans are less likely to experience caregiving as physically burden-some. Similarly, Cox (1995) found a negative association of age and burden in African American caregivers, but no significant association in Whites.
Health: Caregiver health has also been identified as a significant predictor of caregiver depression (Lawton, Moss, Kleban, Glicksman, & Rovine, 1991). This association with depression suggests that caregivers with lower levels of physical health are more vulnerable to the psychological consequences of caregiving.
Studies have reported poorer physical health among caregivers than age -matched peers,and such health problems are linked to an increased risk of depression (Baumgarten et al., 1992; Stone et al., Haley et al., 1987)
Not only have caregivers reported having poorer perceived health(Schulz R et al.,1995) and a greater number of physical symptoms, but it has also been demonstrated that caregivers mount poorer immune responses to viral challenges(Glaser R,Kiecolt-Glaser JK.,1997), evidence slower rates of wound healing(Kiecolt-Glaser JK et al.,1995) and have significantly higher levels of plasma insulin(Vitaliano PP et al.,1996) than do age matched control subjects. Longitudinal studies also demonstrated that caregivers are at a greater risk than non care giving age matched controls for developing mild hypertension and have an increased tendency to develop a serious illness(Shaw WS et al.,1997) as well as increased risk for all-cause mortality(Schulz R,Beach SR.,1999).
Men and women who suffer depression have greater cardiovascular risks. Many carers do not pay sufficient attention to their needs for a healthy diet, sufficient sleep, and regular exercise. These practices are also important for successful stress management. They have a protective role in reducing the risk of depression and other health problems. Carers who do not attend to their own health needs have a greater chance of developing health problems, which leads to an increased risk of depression (Gruetzner, 2001).Other investigators have found that family caregivers who did not take care of their own health reported higher levels of caregiving stress and more problematic behaviours with the care recipients (Shaw et al., 1997).
Ethnic and Cultural affiliation: Ethnicity has substantial impact on the caregiving experience (Gruetzner, 2001).
Explanations for lower burden and less depression reported by Black carers as compared to those of their White counterparts have yet to be clarified. Probable explanations suggested were that the distress of caregiving may be viewed by Black carers as relatively minor, as they may be more likely to view the symptoms of dementing illnesses as part of the normal ageing process, and they may receive more help from other informal social support systems (Choi, 1998). Gender differences with respect to psychological well being of ethnic minority caregivers has not been sufficiently addressed in the literature, although work by Miller et al. suggest no gender differences between African Americans and Anglos (Miller et al., 1995).
Cultural differences may affect caregiver’s attitudes about treatment. In a study of primary care patients, Cooper found that acceptance of antidepressant medication was significantly lower among African-American and Hispanic patients than among whites, while more than 90% of African Americans believed that "prayer can heal depression”. Cooper LA, et al., 2003.
Comprehensive reviews of the literature have identified differences in the stress process, psychological outcomes, and service utilization among caregivers of different racial and ethnic backgrounds (Connell & Gibson, Janevic & Connell,2001).Studies consistently show important differences in perceived burden and depression among African American, White, and Hispanic family caregivers (Calderon &Tennstedt, 1998; Haley et al., 1996). Studies suggest that African American caregivers report fewer depressive symptoms and lower burden than White or Hispanic caregivers (Connell & Gibson, 1997).Caucasian caregivers tend to report greater depression and appraise caregiving as more stressful than African American caregivers (Farran, Miller, Kaufman, & Davis, 1997; Haley et al., 1996). However, Hispanic caregivers report greater depression and behavioural burden than Caucasians and African Americans (Harwood et al., 1998).
A significant limitation of above studies is the lack of attention to the potential impact or role of racial and ethnic identity on caregiving and how that may affect responses to intervention (Aranda & Knight, 1997; Connell & Gibson, 1997). Culture is known to influence the construction of illness perceptions (Kleinman, Eisenberg, & Good, 1978; Lockery, 1991). The failure to address multicultural issues in intervention research has led to significant gaps in knowledge about psychological problems such as depression and its treatment in the various ethnic subgroups (Sue, Bingham, Porsche-Burke, & Vasquez, 1999).It seems reasonable to expect that racial and ethnic identity may shape cultural beliefs about dementia, which in turn may affect how families respond to the challenges of long-term caregiving and interventions designed to support these efforts (Haley, Han ,& Henderson, 1998).
Social support: Social support has profound effects on caregiver outcomes. Reports invariably indicate that more social support corresponds to less depressive symptomatology (Baumgarten et al., 1992; Schulz & Williamson, 1991) and lower perceived burden (Gallant & Connell, 1997). Social support and caregiver burden have been found to mediate depression in caregivers (Clyburn et al.,2000).
Social support has other important functions in that, carers may find out about services from people who have used them before and form a network with others in similar situations. (Gruetzner, 2001).
Other Characteristics: Loss of self identity is associated with carer depression. Carers face three processes that lead to this problem : chronic stress, role engulfment, and the loss of the patient with dementia. Role engulfment is common because carers no longer have the time or energy to engage in other activities. Prior to caregiving these activities had been important sources of support.
Another category of risk predictors for carer depression involves characteristics of the caregiving context , this includes the caregiver's relationship to the care recipient and the living arrangements. The literature provides substantial evidence that the caregiving experience is most difficult for spousal caregivers (Pruchno & Resch, 1989a). Spousal caregivers experience more depressive symptoms than other caregivers (Baumgarten et al.,1992; Cohen et al.,1990).
Findings concerning the relationship between patient residence and caregiver outcome are inconsistent. Several studies have indicated that caregivers who lived with their parents had higher burden or depression scores than those who lived apart from the care recipient (Grafstorm et al.,1992 et al., 1997). Others, however, have found no significant association between living arrangements and caregiver distress (Dura et al.,1991).
COPING STRATEGIES AND OTHER INTERVENTIONS IMPACTING ON STRESS
There is increasing interest in examining the factors that help caregivers successfully manage their role, while minimizing the effect on their mood and general well-being (Quayhagen &Quayhagen, 1988).Much of this research has been done within the general framework of stress and coping theory (Lazarus &Folkman, 1984),examining coping styles of caregivers and the relationship between types of coping styles and reported symptoms of depression (Fingerman, Gallagher-Thompson, Lovett,& Rose,1996;Pruchno &Resch,1989;Williamson &Schulz,1993).
A variety of interventions have been developed which support caregivers. Interventions include: training and education programes, information-technology based support and formal approaches to planning care, which take into account the specific needs of carers,sometimes using specially designated nurses or other members of the health care team(Woods.,2003).
Ballard et al have demonstrated that a higher level of carer education regarding dementia increase carer's feelings of competency.This was more likely to have reduced their expectations of their dependents abilities. Previous studies which have looked at these coping strategies and feeling of competence have shown that unrealistic expectations of a dependant with dementia increase a carer's risk of depression (Coppel et al., 1985), and conversely a reduction of carer's
expectations is associated with lower rates of depression (Saad et al., 1995). Caregivers who maintain positive feelings towards their relative have a greater level of commitment to caring and a lower level of perceived strain (Horowitz and Shindelman, 1983);furthermore carers who experience feelings of powerlessness, lack of control and unpreparedness have higher levels of depression (Coppel et al., 1985). The most effective treatments in depression of carers appear to be a combination of education and emotional support (Lawton, 2000).
Spiritual support can also be considered a coping resource and has been studied in older African Americans (Chatters et al., 1992; Levin et al., 1995) and older Mexican Americans (Levin et al., 1996).Previous work examining the role of spiritual support observed that African American caregivers report higher spiritual rewards for caregiving (Picot et al., 1997), and reliance on prayer and church support (Dilworth-Anderson and Anderson, 1994).
Religious coping plays paramount role, and it is often present at higher levels for African Americans and Hispanics. For REACH caregivers, Coon et al.(2004) and Haley et al. (2004) find that religious coping is greater for Hispanic and African American than for White caregivers. Religious involvement is frequently associated with more access to social support as well (Walls & Zarit, 1991).
Anecdotal literature (Haley et al.,1987) suggests that caregivers who use more active coping strategies, such as problem solving, experience fewer symptoms of depression than do those who rely on more passive methods . Supporting this work, Saad and colleagues(1995) reported significant associations between positive strategies for managing disturbed behaviour and active strategies for managing the meaning of the illness , and reduced levels of caregiver depression. Nolan and colleagues (1997) suggest that an important role for health -care professionals is in helping caregivers enhance their coping skills, supporting existing skills and facilitating the development of new ones.
Positive aspect to the role
Caregiving has some positive associations for caregivers , including pride in fulfiling spousal responsibilities,enhanced closeness with a care receiver, and satisfaction with one's competence (Kramer, 1997).These perceived uplifts of caregiving were associated with lower levels of caregiver burden and depression in a meta-analysis (Pinquart & Sorensen ,2003). Perceived uplifts are more common among caregivers of color than among Whites (Coon et al.,2004 ; Haley et al., 2004).
Social and professional support
High quality of informal relationships and presence of informal support is related to lower caregiver depression (Cox, 1995) and less deterioration in emotional health for African American caregivers, but not for Whites (Allen, 1993).Support of caregivers by others help to alleviate stress if the supporter is understanding and empathic(Haley et al.,1987).Highly stressed persons may not be able to benefit from attempted social support of others as much as moderately stressed persons (Rivera et al.,(1991).
Caregivers need to have the opportunity to learn more effective ways of coping with stress, In order to reduce anxiety and their reliance on treatments (Gruetzner, 2001).Bourgeois et al., report that caregivers behavioural skills and effective self management training program results in a lower frequency of patient behavioural problems and helps to improve the caregivers mood. Stevens and Burgio (2000) designed a caregiver intervention that teaches caregivers behavioural management skills to address problem behaviours exhibited by individuals with AD,in addition to problem solving strategies to increase pleasant activities for the caregiver.
Psychotherapy may be of some benefit in patients with early dementia but, due to cognitive loss, some adaptation of the technique is required and the involvement of carers is often necessary (Cheston.,1998).Cognitive-behavioural family intervention can have significant benefits in carers of patients with dementia and has a positive impact on patient behaviour.(A.Marriott et al.,2000).
Passive coping styles have been associated with greater burden. Persons who use an escape-avoidance type of coping are known to have more depression and interpersonal conflicts (Gruetzner, 2001).
Among caregivers with depressive symptoms ,19%used antidepressants,23% antianxiety drugs, and 2% sedative hypnotics. African-American caregivers were less likely than Whites to be taking antidepressants(B Sleath et al.,2005).
In a study by Helen C.Kales et al.,2004, use of herbal products/supplements was found in 18% of elderly subjects with depression and/or dementia and in 16% of their care givers.
ROLE OF RESPITE
Respite care is seen by many carers as a very important service in caring for patients with dementia. Information about various respite options, and the availability of affordable, reliable and flexible programs which can manage behavioural problems, appear to be high priorities in enhancing carer well-being (Bloch, 1998). Burdz et al. (1988) examined the effect of respite care and defined it as temporary institutionalisation (in both cases for a period of two weeks) of the person with dementia in a nursing home and in a hospital .
In the Burdz et al. study, respite care proved to have a positive effect on the burden experienced by the caregivers, and it also had a positive effect , against all expectations , on the cognitive and physical functioning of the persons with dementia. Sutcliffe and Larner (1988) studied the effect of individual support for the carers at home (information and emotional support combined with relaxation exercises). The group receiving emotional support improved significantly on mood, whereas the control group deteriorated significantly. Zarit et al. (1998) report the findings of an evaluation of the psychological benifits of the use of adult day care by family caregivers assisting a relative with dementia.It was concluded that use of day care results in lower levels of caregiver-related stress and better psychological well-being.
Abuse, may include physical, psychological, sexual and financial maltreatment,
may be the result of the actions of others (e.g., caregivers) or may result
from neglect by others or by self (Dyer et al., 2000).
Caregivers depression, while providing care to a family member suffering from
dementia may lead to both verbal or physical abuse. Variety of studies have
identified risk factors for abuse of the elderly by family members and other
caregivers (Dyer et al., 2000; Lachs et al., 1997).
Such factors include excessive physical and psychological demands associated
with caregiving; advanced age, poor health, physical frailty and impaired
activities of daily living (ADL) on the part of the care recipient; alcohol
and other substance abuse by caregivers; the caregiver and care recipient living
together; caregiver psychopathology; and a family history of abusive behaviour.
In addition, a number of investigators have found that mental health factors such
as caregivers depression while caring for a person with dementia increase the
risk of abuse within a caregiving relationship (Dyer et al.,2000; Paveza et al.,
Caregivers themselves may face verbal or physical abuse directed at them by
the patient with dementia. In some cases, Alzheimer's disease or other forms of
dementia may cause the patient to be uncharacteristically aggressive. In other
cases, verbal abuse or physical violence may have been typical of family
interactions before the illness(A C Coyne et al.,1996), and may be exacerbated
by the illness.
A House of Commons report published on BBC (British Broadcasting
Corporation) in 2004 states that 67% of elderly abuse occur in
their own home,12%in nursing homes & 10% in residential care.
There appears to be a relationship between abuse of a family member and
caregiver burden and depression. Caregivers who report directing abuse
toward patients are often more stressed or burdened by caregiving
responsibilities and depression than individuals not engaging in abuse.
Interventions to reduce burden and treat depression should serve to limit abuse
(Paveza et al 1992).
Abuse prior to the onset of dementia appears to be associated with a greater
likelihood of abusiveness between caregivers and care recipients once dementia
occurs. Although such a cycle of abuse (Steinmetz, 1988) is difficult to break,
interventions such as supportive counselling and individual or family
psychotherapy for caregivers, respite or in-home care services for patients, and
alternative living situations for all parties concerned may be helpful (Burkhart,
The impact of caring for a relative with dementia brings the risks of mental ill health to the carer in the form of emotional stress, depressive symptoms or clinical depression. The ramifications of this may include negative effects on the quality of life for the carer and sufferer and the standard of care delivered to support the sufferer. On the higher level ,carers depression is a serious public health problem leading to substantial costs, in varying regards, to society e.g., early entry to long term care.
The challenge to health and social care providers is to properly recognize this symbiotic union and to support it effectively. Quality care needs to be delivered to both units in this union, the sufferer and the carer, if a meaningful package of care is to be allocated. Vigilance is required from those professionals involved in dementia care to reduce carer burden and detect early signs of compromise in carers mental health.
Personal education for carers in the form of advice about dementia itself and the warning signs of carer stress, such as denial, anger, social withdrawal, anxiety , depression, exhaustion, sleeplessness etc. is beneficial.
The needs of carers are increasingly recognized across agencies and, in the United Kingdom, integral to the Unified Assessment Process in the statement that carers are entitled to an individual assessment in their own right. The Draft National Service Framework for Wales 2005, which is a multi agency stakeholder document, points to the vulnerability of carers and states that specialist services for people with dementia should include " interventions for carers, for example structured advice/training, counselling services or short breaks".Caring for the carer is as important as caring for the individual with dementia for a successful outcome in difficult circumstances.
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