Alzheimer s disease: the psychological and physical effects of the caregiver s role. Part 1

Transcription

1 Alzheimer s disease: the psychological and physical effects of the caregiver s role. Part 1 JOHN BIRDSALL The extended impact of illness Abstract Caring for a person with Alzheimer s disease can cause emotional, psychological and physical problems. In most cases of Alzheimer s disease, at least two individuals are affected: the person with the condition and the caregiver. This article is the first of two about Alzheimer s disease and its effect on informal carers. The first discusses the literature that relates to the physical and psychological effects of caring for a person with Alzheimer s in the home. The second article summarises a quantitative study of 42 caregivers in the west of Ireland, and the physical and psychological effects of the caregiving role on them. Edel Mannion DipNS, BNS, Masters in Health(Nursing and Midwifery), is a project leader, nursing documentation, practice development, University Hospital Galway, Ireland Alzheimer s disease Carers Literature review Key words These key words are based on the subject headings from the British Nursing Index. This article has been subject to double-blind review. Alzheimer s disease attacks the brain and impairs memory, thinking and behaviour, eventually rendering patients incapable of caring for themselves (Tabak et al 1997; Query et al 2005). It is devastating for those afflicted, their family members who often care for them and the healthcare system (Yin et al 2002). As this form of dementia develops, many family members are likely to assist the patient with daily necessities such as feeding, grooming, bathing and dressing (Vrabec 1997). Current health and social care policy is reliant on the continued availability of family or friends to provide, on a voluntary basis, the care required in the community (Timoney 2004). Dementia has not been a healthcare priority (Jones 2005). Government investment in treating and providing resources to help affected people has been inadequate (Boland and Sims 1996, Skillet 2005). According to the Alzheimer Society of Ireland (2006), there is a need to increase awareness about the growing number of people with dementia and the significant cost involved (Adams 1996, Wilkinson 2005). In most cases of Alzheimer s disease, at least two individuals are affected: the person with the condition and the caregiver (Skaff et al 1996). The Alzheimer Society of Ireland (2006) says that the wellbeing of a person with dementia depends directly on the wellbeing of the person who is providing his or her care (Boland and Sims 1996). Query et al (2005) define the caregiver as a family member or significant other who provides the majority of support and personal care to a patient (Ferry 2001). As the disease progresses, caregivers often find themselves cut off from friends and regular social activities (Alzheimer Society of Ireland 2006). Nurses need to become more aware of the nature and demands of family caregiving in relation to Alzheimer s disease in order to campaign for better statutory services for caregivers. This will help to influence public policy with regard to care (Ferrario et al 2003). It is hoped that this research will generate interest and awareness of the effects of caring for a person with Alzheimer s disease and will create a sense of urgency surrounding dementia, inspiring action among the general population, third party groups, May vol 20 no nursing older people 27

2 healthcare providers and policymakers at every level (Bond et al 2005). Physical effects on the caregiver Caring for a family member with dementia is regarded as a chronically stressful process, with potentially negative physical health consequences (Vitaliano et al 2003; Mahoney et al 2005). Vitaliano et al (2003) found in a meta-analysis of 23 studies that caregivers of people with dementia face five to 15 years of exposure to physical and psychosocial demands (Thomas et al 2006). They shoulder the burden of household chores and are exposed to symptoms of depression, anger, agitation and paranoia in their care recipients (Tarrier et al 2002; Rinaldi et al 2005). Thomas et al (2006) undertook a descriptive study to determine parameters that influence caregivers quality of life and found that behavioural problems such as patient depression, agitation and wandering are rated as most stressful by caregivers because they can occur unpredictably and often require continuous monitoring. Perlick et al (2005) say that, in addition, caregivers face the progressive deterioration of the personality of a loved one, or the loss of self that occurs when spouses or parents who appear physically healthy lose their core personality (Rimmer et al 2005). Pinquart and Sorensen (2004) propose from a meta-analysis of 60 articles on caregiver wellbeing that witnessing the decline, suffering and death of a relative from dementia is among the most traumatic aspects of care giving (Baker 1997; McConaghy and Caltabiano 2005). Caregiving is also called the unexpected career as what often begins as part-time assistance can become an all-encompassing role (Vitaliano et al 2003). Families commonly continue caregiving duties even after nursing home placement, averaging nine hours per week of continued caregiving. Krach and Brooks (1995) conducted a descriptive survey to identify responsibilities and needs of working caregivers of older people. A 30-item questionnaire was completed by 760 caregivers employed at Purdue University, a large Midwestern university in Indiana, US, with a mean age of 52 and of whom 66 per cent were female. This study found that subjects experienced a variety of health problems: n 32 per cent had headaches n 29 per cent had nervousness n 29 per cent had insomnia n 26 per cent had weight loss or gain n 22 per cent had unusual drowsiness. A major limitation of the study, as identified by the researchers, is that most subjects were white and lived in rural towns. Gallant and Connell (2003) conducted a similar study and found that caregiving is associated with inadequate exercise, loss of sleep and weight gain or loss. This is supported by Sansoni et al (2004) who found that 56 per cent of caregivers experienced loss of energy, weight fluctuations and insomnia. However, the sample size was very small so caution must be exercised in generalising the findings (Polit and Beck 2001). Suinn (2001) adds that caregivers often experience anger and anxiety that leads to unhealthy behaviours such as increased alcohol consumption, unhealthy diet, use of tobacco and disturbed sleep. Sansoni et al (2004) support this and state that carers who experience anger have a poorer self-rated health. Gitlin et al (2003) propose that caregiving can affect caregivers immunity (Mills et al 1999). This is also identified as a factor in the study conducted by Cacioppo et al (1998), who investigated whether the stress of caregiving alters cellular immune responses to acute psychological stressors. Twenty seven women caring for spouses with a progressive dementia (high chronic stress) and 37 controls matched for age and income performed a 12-minute laboratory stressor. Cellular immune function was assessed by both functional and quantitative measures taken before (low acute stress), immediately after (high acute stress), and 30 minutes after exposure to laboratory stressors (recovery from stress). Results indicated that the chronic stress of caregiving is associated with a diminished leukocyte proliferation in response to the mitogen, concanavalin A, and caregivers were also characterised as having a lower percentage of natural killer cell cytotoxicity (caregivers = per cent, controls = per cent). These findings are consistent with earlier research showing that long-term caregiving for a spouse with Alzheimer s disease is associated with a decrease in immunity (Mills et al 1999; Vedhra 2000). Vitaliano et al (2002) state that there is extensive empirical support for the hypothesis that chronic stress is associated with cardiovascular disease (Mills et al 1999; Grant 1999; Grant et al 2002). Uchino et al (1994) conducted a longitudinal study to examine the relationships between family caregivers construal of their pre-illness affection for and cohesiveness with the person with Alzheimer s disease and subsequent cardiovascular functioning. In a study conducted two years later, 31 family caregivers of a patient with Alzheimer s disease performed stress-inducing tasks while cardiovascular activity was monitored.analyses 28 nursing older people May vol 20 no

3 revealed that caregivers relatively high in pre-illness affection for the person with Alzheimer s were characterised by lower heart rate reactivity and resting diastolic blood pressure. In contrast, caregivers relatively high in pre-illness cohesion were characterised by higher resting systolic and diastolic blood pressure. The results suggest that a caregiver s construal of his or her relationship with the person before the onset of Alzheimer s disease predicts, if not contributes to, subsequent cardiovascular response. Results from Vitaliano et al (2002) revealed that baseline coronary heart disease (CHD) prevalence in caregiver men was 20 per cent compared with 10 per cent in non-caregivers, and 27 to 30 months later this was 50 per cent in caregiver men and 25 per cent in non-caregiver men. Overall, the prevalence of CHD increased by 19 per cent in caregivers compared with 8 per cent in noncaregivers during the experimental period. One limitation of this study is that the sample size was reduced. Caution is required to avoid over-interpreting the data (Polit and Beck 2001). Much of the research on Alzheimer s disease and its physical and psychological effects on caregivers has used the method of self-report (Sansoni et al 2004). Hosaka and Sugiyama (2003) conducted a quantitative study using a self-report instrument and found that five out of 20 caregivers felt that they were completely healthy. This is supported by Perlick et al (2005) and Rinaldi et al (2005), who found that caregivers have poorer self-rated physical health. The inconsistencies in studies comparing caregivers and non-caregivers make it difficult to draw clear conclusions about the prevalence of poor physical health of caregivers. A reason for this is that there are sampling issues with caregiver research (Vitaliano et al 2003). Many studies on caregiving are based on nonrepresentative samples that over-represent distressed caregivers (Pinquart and Sorensen 2003). Thus, caregivers might not experience significantly higher level of distress than the general population if they were sampled differently. Also many studies have large sampling errors due to small sample size (Schulz et al 2003). Gender is an important moderator of caregiver health because female caregivers constitute the majority of those who provide care for older people and those with dementia (Ory et al 1999; Gallicchio et al 2002; Vitaliano et al 2003). Pezzini et al (2003) reported the oldest Alzheimer-disease caregiver ever, a 95-year-old woman who looked after her sister. She was neither burdened nor depressed and rated her health as excellent. Chii-Jun (2005) conducted a cross-sectional study using structured questionnaires administered to 388 unpaid caregivers who were looking after a family member in the home. The Chinese Health Questionnaire and Self-Rated Health Scale were the instruments used to assess caregiver health. This study found that, compared to the male caregiver, the female caregiver more often reported lack of wellbeing, and a decrease in psychosocial health and overall self-rated health. Schulz and Beach (1999) conducted a similar study, which found that women reported greater health problems than did men, and Meller (2001) found that women were more stressed than men even though they had more social activities and telephone contacts (Fudge et al 1997). By contrast, men exposed to laboratory stressors show larger and more consistent increases in stress hormones, neurotransmitter metabolites, and blood pressure than do women (Rivera et al 1991, Bourgeois et al 1996). This may be further exacerbated when faced with a stressor such as caregiving, which is inconsistent with men s traditional gender roles (Chii Jun 2005). Dunkin and Anderson-Hanley (1998) maintain that these findings can be interpreted in many ways, including the possibility that they represent women s greater comfort with expressing feelings, or that there are caregiving task differences between male and female caregivers, or the possibility that female caregivers have greater stress from multiple social roles than male caregivers. On the other hand, McConaghy and Caltabiano (2005) found in a cross-sectional research study that there were no differences in the perceived burdens of males and females. However, sample size was again small. Goode et al (1998) maintain that caregivers who have a social network experience better selfrated health than those who do not (Gaugler et al 2003). Robinson and Steele (1995) conducted a qualitative study on 75 female spouses to identify social network and effect on caregiver burden. It was found that healthy caregivers were perceived to have significantly more people in their social networks. Gwyther and Strulowitz (1998) add that working outside the home is advantageous for caregivers. Perhaps through psychosocial logic mechanisms, including enhanced self-esteem, mastery or self-efficacy, or possibly because activities and employment outside the home inhibit social isolation, these participants benefit from their dual role. Yet the removal of the person with Alzheimer s does not appear to improve caregiver wellbeing. Grant et al (2002) conducted a longitudinal study of 119 caregivers to determine the extent to which May vol 20 no nursing older people 29

4 the chronic stress of Alzheimer s disease caregiving may be alleviated by the placement or death of the person with Alzheimer s. It was found that despite improvement in mood and other psychological symptoms among caregivers who place their spouses in care or experience their spouse s death, there may be longer-term physiological alterations that cause the cardiovascular system to continue to respond to acute stressors, such as postural challenge, more actively for a period of up to 12 months after such transitions. Psychological effects The fact that caring for a person with dementia places the carer at greater risk of experiencing serious psychological disorders such as depression has been well documented (McConaghy and Caltabiano 2005). Sansoni et al (2004) conducted a descriptive study to assess anxiety and depression in female community-dwelling Italian Alzheimer disease caregivers. Findings indicate that 76 per cent experienced anxiety and 42 per cent experienced depression. This is supported by Alspaugh et al (1999). By contrast, Mahoney et al (2005) interviewed 153 Alzheimer s disease caregivers as part of a larger representative study and found that 23.5 per cent experienced anxiety and only 10.5 per cent had depression. Anxiety and depression were assessed using the Hospital Anxiety and Depression Scale (Mykletun et al 2001), which, although it has good validity and reliability for detecting these states, is not a diagnostic tool based on gold standard criteria. Yee and Schultz (2000) reviewed a range of literature on psychiatric morbidity and depression among caregivers with respect to gender differences. They found that the majority of studies reported female caregivers having higher levels of depression than male caregivers (Dura et al 1991, Fudge et al 1997, Chii Jun 2005). However, Hinrichsen and Niederehe (1994) reported inconsistent findings in terms of depression by gender. They did not find significant differences in depression between male and female caregivers. According to Gallicchio et al (2002), female caregivers in general spend more time with the care receiver than male caregivers. This may put them at greater risk of psychological morbidity. They also provide more caregiving assistance in general than male caregivers (Yee and Schultz 2000). In addition, male caregivers tend to obtain more assistance from their families and friends, while female caregivers tend to receive less assistance (Lutzky and Knight 1994). Previous studies have suggested that caregiver distress is more closely associated with behavioural disturbances such as wandering, repetitive vocalisation and physical aggression than References Adams T (1996) Informal family care giving to older people with dementia: research priorities for community psychiatric nursing. Journal of Advanced Nursing 24, 4, Alspaugh M et al (1999) Longitudinal patterns of risk for depression in dementia caregivers: objective and subjective primary stress as predictors. Psychology and Aging 14, 1, Alzheimer Society of Ireland (2006) Alzheimer s News 12, 1, 1-8 Baker S (1997) The relationship of self-care agency and selfcare to caregiver strain as perceived by female family caregivers of elderly parents. Journal of the New York State Nurses Association 28, 1, 7-11 Baumgarten M et al (1994) The psychological and physical health of family member caring for an elderly person with dementia. Journal of Clinical Epidemiology 45, Boland DL, Sims SL (1996) Family care giving at home as a solitary journey. Image the Journal of Nursing Scholarship 28, 1, Bond J et al (2005) Inequalities in dementia care across Europe: key findings of the facing dementia survey. International Journal of Clinical Practice 59, 146, 8-14 Bourgeois M et al (1996) When primary and secondary caregivers disagree: predictors and psychosocial consequences. Psychology and Aging 11, 3, Cacioppo J et al (1998) Cellular immune response to acute stress in female caregivers of dementia patients and matched controls. Health Psychology 17, 2, Chii Jun C (2005) The health status of family caregivers in Taiwan: an analysis of gender differences. International Journal of Geriatric Psychiatry 20, Davies H et al (1997) Patterns of coping preferences for male and female caregivers of frail older adults. Psychology and Aging 12, 2, Dunkin J et al (1998) Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurology 51, 1, Dura J et al (1991) Spousal caregivers of persons with Alzheimer s and Parkinson s disease dementia: a preliminary comparison. The Gerontologist 30, Ferrario S et al (2003) Care giving related needs analysis: a proposed model reflecting current research and socio political developments. Health and Social Care in the Community 11, 2, Ferry R (2001) Why caregiver depression and self-care abilities should be part of the PPS case mix methodology. Home Healthcare Nurse 19, 1, Fudge H et al (1997) Social networks of women caregivers. Public Health Nursing 14, 1, Gallant M, Connell C (2003) Neuroticism and depressive symptoms among spouse caregivers: do health behaviours mediate this relationship? Psychology and Aging 18, 3, Gallicchio L, Siddiqi N, Lagenberg P, Baumgarten M (2002) Gender differences in burden and depression among informal caregivers of demented elders in the community. International Journal of Geriatric Psychiatry 17, Gaugler J et al (2000) Modelling caregiver adaptation over time: the longitudinal impact of behaviour problems. Psychology and Aging 15, 3, Gaugler J et al (2003) The onset of dementia care giving and its longitudinal implications. Psychology and Aging 18, 2, Gaugler J et al (2005) The longitudinal effects of early behaviour problems in the dementia care giving career. Psychology and Aging 20, 1, Gitlin L et al (2003) Effect of multicomponent interventions on caregiver burden and depression: the reach multisite initiatives at 6 month follow up. Psychology and Aging 18, 3, Goode K et al (1998) Predicting longitudinal changes in caregiver physical and mental health: a stress process model. Health Psychology 17, 2, Grant I (1999) Care giving may be hazardous to your health. 30 nursing older people May vol 20 no

5 with other dementia symptoms (Gaugler et al 2000; Mohide 2001; Morgan 2002). However, longitudinal analyses of the association between behavioural disturbances and caregiver depressive symptoms have generally relied on a small number of widely spaced observations over a one to two-year period (Baumgarten et al 1994; Alspaugh et al 1999; Hooker et al 2002) and some studies measured behaviour only at baseline (Baumgarten et al 1994; Li et al 1999). As noted by Hooker et al (2002), this approach may not capture the sporadic occurrence of behavioural disturbances or fluctuations in distress associated with these behaviours. Gaugler et al (2005) conducted a study to determine how behaviour problems that occur early in the caregiving career influence time to nursing home placement and change in burden and depression over time. Caregivers who manage frequent behaviour problems earlier are more likely to institutionalise and have greater increases in depression over time. Shau Haim and Ross (2001) conducted a similar study and found that carers of patients with scores less than or equal to 20 on the Mini Mental Status Examination were 5.2 times more likely to experience depression than those who cared for patients with normal cognitive functioning. Similarly, Morgan (2002) found that depression in the carer was predicted by depressive symptoms in the patient, and these carer symptoms increased over time. However, Shau Haim and Ross (2001) noted that only 1 per cent of their sample reported clinical depression. This may indicate an attempt to under-report the severity of depression symptoms so as to be able to continue as the primary caregiver. Rinaldi et al (2005) suggest that a poor prior relationship is predictive of greater caregiver depression and burden. Yamashita and Amagai (2004) found in a qualitative study in Japan that good prior relationships were necessary for successful caregiving (Davies et al 1997). This is supported by Mahoney et al (2005) who concur that a poor prior relationship with the care recipient predicted depression in the caregiver. Individual variations in coping strategies help to explain differences in mental health outcomes (Davies et al 1997). A quantitative study of 315 caregivers to investigate different coping strategies and their effect on caregivers mental health found that emotion-focused coping which Lutzky and Knight (1994) define as avoiding confrontation and accepting personal blame was the coping strategy of choice. However, Zautra and Wrabetz (1991) found that active coping efforts, including seeking support, taking action and emotional expression, were related to less distress in caregivers. Larkin (2004) suggests that psychological Psychosomatic Medicine 61, 4, Grant I et al (2002) Health consequences of Alzheimer s care giving transitions: effects of placement and bereavement. Psychosomatic Medicine 64, Gwyther L, Strulowitz S (1998) Caregiver stress. Current Opinion in Psychiatry 11, 4, Hinrichsen G, Niederehe G (1994) Dementia management strategies and adjustment of family members of older patients. Gerontologist 34, Hooker K et al (2002) Mental and physical health of spouse caregivers: the role of personality. Psychology and Aging 7, 3, Hosaka T, Sugiyama Y (2003) Structured intervention in family caregivers of the demented elderly and changes in their immune function. Psychiatry and Clinical Neurosciences. 57, Jones R (2005) Barriers to optimal intervention and care for people with dementia. International Journal of Clinical Practice 59, 3, Kiecolt-Glaser J et al (2001) Hypnosis as a modulator of cellular immune dysregulation of acute stress. Journal of Clinical Psychology 69, Krach P, Brooks J (1995) Identifying the responsibilities and needs of working adults who are primary caregivers. Journal of Gerontological Nursing 10, Larkin M (2004) Emotional effects of care giving linger after spouses death. Caring for the Ages. 3, 2, Li L et al (1999) Change in depressive symptoms among daughter caregivers: an 18- month longitudinal study. Psychology and Aging 14, 2, Lutzky S, Knight B (1994) Explaining gender differences in caregiver distress: the roles of emotional attentiveness and coping styles. Psychology and Aging 9, 4, Mahoney R et al (2005) Anxiety and Depression in Family Caregivers of People with Alzheimer s Disease.The LASER AD study. London, Department of Mental Health Sciences, University College London McConaghy R, Caltabiano M (2005) Caring for a person with dementia: exploring relationships between perceived burden, depression, coping and wellbeing. Nursing and Health Sciences 7, Meller S (2001) A comparison of the well-being of family caregivers of elderly patients hospitalised with physical impairments versus the caregivers of patients hospitalised with dementia. Journal of the American Medical Directors Association 2, 2, Mills P et al (1999) Vulnerable caregivers of patients with Alzheimer s disease have a deficit in circulating CD62L-T lymphocytes. Psychosomatic Medicine 61, 2, Mohide EA (2001) A cognitive behavioural family intervention reduced psychiatric morbidity in caregivers of patients with Alzheimer s disease. Evidence Based Nursing 4, 2, 52 Morgan D (2002) Review: pharmacological and non- pharmacological interventions improve outcomes in patients with dementia and their caregivers. Evidence Based Nursing 5, 1, 20 Mykletun A et al (2001) Hospital anxiety and depression scale: factor structure, item analyses and internal consistency in a large population. British Journal of Psychiatry 179, Ory M et al (1999) Prevalence and impact on care giving: a detailed comparison between dementia and non dementia caregivers. American Journal of Orthopsychiatry 61, Perlick D et al (2005) Use of mental health and primary care services by caregivers of patients with bipolar disorder: a preliminary study. Bipolar Disorders 7, Pezzini A et al (2003) Caregiving and age: the case of a very old sister of a patient with Alzheimer s disease. Journal of the American Geriatrics Society 51, 12, 1817 Pinquart M, Sorensen S (2004) Associations of caregiver stressors and uplifts with subjective well being and depressive mood: a meta analytic comparison. Psychology and Aging 8, 5, May vol 20 no nursing older people 31

6 outcomes resulting from long-term caregiving remain present even when the care recipient dies (Larkin 2004). Kiecolt-Glaser et al (2001) studied 49 former caregivers of a spouse with dementia and 49 current caregivers and 52 matched controls who were non-caregivers. It was found that even several years after a spouse s death, former caregivers did not improve in several measures of psychological wellbeing. Forty one per cent of former caregivers had mild to severe depression two to three years after the spouse s death, which was not significantly different from the 43 per cent depression rate among current caregivers. By contrast, the depression rate was 15 per cent among controls. Robinson-Whelan et al (2001) found similar results. Larkin (2004) asserts that caregivers who care for their relatives until they die view caring as their mission, so when the person dies, they lose their goal in life. Conclusion This article summarised the literature on the physical and psychological effects of caring for someone with Alzheimer s disease in the home. The following article describes the methodology, findings, recommendations and implications for practice and of a quantitative study conducted in the west of Ireland on informal caregivers n Pinquart M, Sorensen S (2003) Differences between caregivers and non caregivers in psychological health and physical health: a meta analysis. Psychology and Aging 18, 2, Polit D, Beck C (2001) Essentials of Nursing Research. Methods, appraisal and utilisation. Fifth edition. Lippincott, Philadelphia. Pruchno R, Resch N (1989) Mental health of care giving spouses: coping as mediator, moderator, or main effect? Psychology and Aging 4, 4, Query J et al (2005) Caregivers coordinate cultures: communication with Alzheimer s patients in bi ethnic families. Applied Health Communication: a sourcebook. Boston, Allyn and Bacon Rimmer E et al (2005) Implications of the facing dementia survey for the general population, patients and caregivers across Europe. International Journal of Clinical Practice 59, 146, Rinaldi P et al (2005) Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian muticenter study. International Journal of Geriatric Psychiatry 20, Rivera P et al (1991) Dimensions of perceived social support in clinically depressed and nondepressed female caregivers. Psychology and Aging 6, 2, Robinson-Whelan S et al (2001) Long term care giving: what happens when it ends? Journal of Abnormal Psychology 110, 4, Robinson KM, Steele D (1995) The relationship between health and social support in care giving wives as perceived by significant others. Journal of Advanced Nursing 21, 1, Sansoni J et al (2004) Anxiety and depression in community dwelling, Italian Alzheimer s disease caregivers. International Journal of Nursing Practice 10, Shau Haim J, Ross J (2001) Management of behavioural disturbance in Alzheimer s disease. Journal of Gerontology 40, Schulz R, Beach S (1999) Care giving as a risk factor for mortality: the caregiver effects study. Journal of the American Medical Association 15, Schulz R et al (2003) Introduction to the special selection on Resources for Enhancing Alzheimer s Caregiver Health (REACH). Psychology and Aging 18, 3, Skaff M et al (1996) Transitions in the care-giving career: effects on sense of mastery. Psychology and Aging 11, 2, Skillet S (2005) A caregiver s perspective: the family s life is changed forever. International Journal of Clinical Practice. 59, Suinn RM (2001) The terrible twos anger and anxiety: hazardous to your health. American Psychologist 56, 1, Tabak N et al (1997) Feelings of anger among caregivers of patients with Alzheimer s disease. International Journal of Nursing Practice 3, 2, Tarrier N et al (2002) Expressed emotion and attributions in the carers of patients with Alzheimer s disease: the effect on carer burden. Journal of Abnormal Psychology 11, 2, Thomas P et al (2006) Demented patients caregivers quality of life: the PIXEL study. International Journal of Geriatric Psychiatry. 21, Timoney A (2004) Caring, working and public policy. Equality News. (Equality Authority, Dublin) Winter Uchino B et al (1994) Construal of preillness relationship quality predicts cardiovascular response in family caregivers of Alzheimer s disease victims. Psychology and Aging 28, 1, Vedhra K et al (2000) The role of stressors and psychosocial variables in the stress process: a study of chronic caregiver stress. Psychosomatic Medicine 62, 3, Vitaliano P et al (2002) A path model of chronic stress, the metabolic system and coronary heart disease. Psychomatic Medicine 64, 3, Vitaliano P et al (2003) Is caregiving hazardous to ones physical health? A meta analysis. Psychological Bulletin 129, 6, Vrabec N (1997) Literature review of social support and caregiver burden, Image Journal of Nursing Scholarship 29, 4, Wilkinson D (2005) Is there a double standard when it comes to dementia care? International Journal of Clinical Practice 59, 146, 3-7 Yamashita M, Amagai M (2004) Caring for relatives who are afflicted with dementia in Japan. Journal of Nursing Scholarship 36, 2, Yee J, Schulz R (2000) Gender differences in psychiatric morbidity among family caregivers: a review and analysis. Gerontologist 40, Yin T et al (2002) Burden on family members caring for frail elderly: a meta analysis of interventions. Nursing Research 51, 3, Zautra A, Wrabetz A (1991) Coping success and its relationship to psychological distress for older adults. Journal of Personality and Social Psychology 61, nursing older people May vol 20 no