Reflective Account - Part 3
This essay is based on my practice experience during my hundred-day placement with a local Adult Social Service Department - Reflective Account introduction. The intention of this essay is to look at dementia and how it affects people that look after family members who have dementia and how it develops social work practice. During this period I was involved with a family that had an elderly member with dementia. I chose to focus on this family for this assignment as it offered a great scope on the area of depression experienced by those who give care to family members with dementia.
The whole family had been forced to immigrate to Britain from Uganda in the 70s due to political upheavals when the government of that time gave 24 hours to all Asians in that country to leave or face imprisonment or death. They Settled in London where they set up a curry business. When it came time for them to retire they moved to Margate. By then their only child had taken over the running of the business and had relocated it to Birmingham. On the numerous occasions that I did as part of the assessment on her husband who had been referred to the department she said that she was Stressed, and frustrated and could not cope on her own anymore.
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She looked tired informed her that I would return and carry out a Carers Assessment, a legal requirement with any assessment done under the Community Care Act 1990 and the subsequent legislation The Carer’s (Recognition and Service Act) 1995. Caring for an individual or a related dementia can be challenging and at times overwhelming. Stress and frustration impacts greatly on carers’ physical and mental health, as such depression amongst carers of people with dementia is overlooked and in most cases never treated. Significant high levels of depression are found in individuals providing care to patients with dementia or Alzheimer’s disease.
Carers of people with dementia experience various emotional problems during the course of the illness; the most significant of these problems is depression (Rabins et al, 1982). It is also well documented that carers of dementia patients show more depressive symptoms of dementia than age and gender (Gallagher, et al, 1989). This assignment will look mainly on this mental health issue but will also focusing on factors that are responsible for depression in carer’s of people with dementia and looking at the ethnic, cultural and gender differences.
I will also look at coping methods used by those who give care to members of the family diagnosed with dementia. To begin with, for the reader to understand what dementia is, I have to provide a definition for this condition. 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 reaction reactions, in the absence of gross “clouding of consciousness”, (World Health Organisation, 1986).
It has also been defined as a serious mental disorder caused by brain disease or injury that affects the ability to think, remember and behave normally (Oxford Dictionary, 2000). Most dementia illnesses are progressive and the symptoms differ from one individual to another and also from the early stages to the later stages. The early stages of dementia may not be difficult for the family members but once it progresses to the moderate stage it offers a challenge to them, as the person with dementia often requires a high level of support from them to enable the person to function properly.
It is at this stage that family members begin to realise the full extent of the demands that lay ahead of them. (Draper, 2004) notes that, ‘While the deteriorating memory function is a problem, it is usually not the main attribute that impacts on the carer. It is more often the personality and behavioural changes that causes the most concern, having the greatest effect on those carers who live with the demented person’ (Draper, 2004) The patient suffering with dementia can at time revert back to child like behaviour and can become forgetful, muddled and at times quite aggressive (Draper, 2004).
It is estimated that in 50 years time the number of people with dementia will have tripled thus creating a further burden on the care system and family members who care for people with dementia (Tibbs, 2001). Those who suffer with dementia gradually lose the ability to live independently without someone assisting them. Therefore carer’s well being is of paramount importance here and the Department of Health has recognised this and have put in place strategies to help not only carer’s of people with dementia but carer’s in the wider sense (DOH, 1989).
Most dementia patients are normally cared for by family members who are placed in situations of escalating personal demands. Being a carer of someone with mental dementia is a big challenge involving at times emotional, social and financial burden on the family (Morris 1998). In most cases families tend to prefer looking after their loved one for as long as they can at home. Compared with other conditions such as cancer, dementia is a slow and progressive condition such that the time frame for care provided is long.
Most carer’s with family members who have dementia provide high levels of care and are most likely to report incidences physical strain such as back pain and muscle strain. High levels of emotional stress are also reported by carers who look after family members with dementia as a direct result of the responsibilities of giving care. Psychological strain is also attributed to the causes of depression experienced by carers of family members with dementia.
When a family member is diagnosed with dementia, their carers suffer from loss and bereavement, more so when the condition is at its later stage. This usually causes a lot of anxiety to the carer and will lead to depression. The most common result for caring for someone diagnosed with dementia may also include the loss of companionship and support of someone who has been part of their lives (Mortiz, 1989). This was the case with Mrs XL, she felt loss and bereaved when her husband’s behaviour had changed dramatically and felt at loss as to how she would cope.
Colin Murray Parkes (Bereavement: Studies of Grief in Adult life, 1976) identified five stages of grief, these being alarm, searching, mitigation, anger and guilt, and lastly gaining a new identity. In each of these stages both physical and emotional changes occur that are associated with coming to terms with loss, with the separation of the person who is dead or left and in this case for Mrs XL was the loss of her husband who had been placed in a residential nursing home.
Mrs XL began to display physical symptoms associated with bereavement, she lost her appetite, and her sleeping pattern was affected and was now experiencing palpitations and breathlessness. The stages mentioned by (Murray Parkes, 1986) could help Mrs XL come to terms with her husband’s condition and his placement in a residential nursing home. The five stages identified should not however be used in a linear way to chart people’s progress, but should be used as a guide to help understand people’s reaction to loss and to provide a basis for intervening empathically (Timms and Timms, 1977). Gruetzer, 2001) has linked depression amongst carers of people with dementia to gender, age, health status ethnic and cultural affiliation, lack of support and certain characteristics that are related to the carer. In relation to gender women cares have higher rates of depression than men this is probably due to biological factors, stress exposure, coping mechanisms or lack of social support from relatives. In a study carried out by Schulz and Williamson (1991) for The Centre for Epidemiological Studies established that 39% of female carers as compared to 16% of male carers were at risk of clinical depression.
The probable reason for such an occurrence is that women in our societies are usually thrust into caring the caring role than men. More so women tend to be proactive, that is they tend to get stuck in and do everything themselves rather than delegate some of the caring to other members of the family. On the other hand tend to take on a managerial role in such circumstances thereby allowing them to disengage themselves from stressful situations to a degree by delegating tasks. Age also plays a big part in the depression of carers of people with dementia.
Age related impairments make it difficult for older carers to give to physically provide the proper care to a dementia patient. In a study carried out in America found that age played an important part amongst white carers who found it burdensome to look after someone with dementia, compared to African Americans who in most occasions did not find it such a burden looking after someone with dementia (Lawton, et al). Furthermore carer’s health status has been significantly recognized as a predictor of depression amongst those that look after someone with dementia.
As such carers with lower levels of physical health are more likely to suffer from psychological consequences of caring for someone wit dementia. Men and women in general who suffer from depression have greater chance of having heart diseases. This is due to the fact that carers do not pay much attention to their needs for a healthy diet, sufficient sleep, and regular exercise. This is because there are more concerned with the health and welfare of the person there are looking after and not at themselves.
Carers tend to forget that the processes mentioned above, healthy diet, sufficient sleep and regular exercises are important for successfully managing stress. They have a protective role in reducing the risk of depression and other health problems. Also it was found out that carers who do not look after their health properly experienced high levels of stress and more problematic behaviours with the people there are giving care to (Shaw et al. , 1997). Ethnicity and cultural affiliation can be associated to the susceptibility of depression amongst carers of people with dementia.
As mentioned earlier there is less depression amongst Black and Asian carers as compared to those of their white counterparts and as of yet no explanation has yet been clarified of this fact. Explanations that have been given suggest that culturally the distress of looking after elderly members of the family regardless of illness is relatively minor and that they have earned the right to be looked after when there are older. Besides the symptoms of dementia is usually viewed as part of the ageing process and as such receive more help with carers for that person from their informal support systems (Choi et al 1998).
Moreover cultural differences often affect the carer’s attitude towards treatment. In a study carried out in the United States of primary care patients, it was found that acceptance of antidepressants medication was lower in African-American and Hispanic patients than among whites. This was attributed to the fact that 90% of Afro-Americans believed that if they sought the assistance from “divine power their depression would be cured”(Cooper, L. A. , 2003). As such I was not surprised by Mrs XL’s reluctance in seeking help when offered with respite care for her husband.
This brought about conflict in my practice in that as an individual I felt she needed help in looking after her husband, but professionally her autonomy and rights were paramount. Furthermore in Mrs XL situation it is important for social workers to recognise the values and ethics in our practice when working with people from different ethnic groups. Conflicts and ethical dilemmas do arise in such cases and decision should not clouded by our cultural beliefs and personal norms (Parrott, 2006).
Although not substantiated it is reasonable to say that racial and ethnic identity may shape cultural beliefs about dementia, which in turn affect how families respond to the challenges of long term caring for someone with dementia. Another factor that may cause carer’s depression is the verbal and physical abuse they receive from the family member with dementia. This should also be noted that abuse here goes both ways. There appears to be a relationship between abuse of a family member and care burden and depression. Carers who report direct abuse toward patients are often more stressed or burdened by aring responsibilities and depression than individuals not engaged in abuse. A study carried out to identify risk factors for abuse of the elderly by family members and other carers (Dyer et al, 2000). The factors include physical and psychological demands related to with giving care such as advanced age, poor health and impaired daily living activities of the person with dementia. The abuse of alcohol and other substances by carers living together with the family member with dementia coupled with a family history of abusive behaviour.
Moreover mental health factors such as the carers depression while caring for a person with dementia increases the risk of abuse within a care giving relationship (Dyer et al, 2000). Carers themselves face both verbal and physical abuses from the person there are looking after. In some cases, Alzheimer’s disease or other forms of dementia may cause the patient to be uncharacteristically aggressive. Sometimes verbal or physical violence may have been typical of family interactions before the illness that may be the result of the illness (Deimling et al, 2000).
Moreover Social support plays an important part in shaping out the effects of caring for someone with dementia. If one has a good social support system the carer’s chances of getting depressed will slightly be reduced. Further more social support plays an important role in that, carers may find out about services from people who have used them before and form a network with others in similar situation. It has been noted that social support matches up with less depressive symptoms that exist within those that suffer with depression (Schulz and Williamson, 1991).
Within the realm of caring for someone with dementia, the loss of self-identity can be associated with carer depression. In such cases carers experience chronic stress brought on by caring for someone with dementia. Secondly the carer will experience role engulfment, that is carers at this point would have reached a stage where he or she no longer has the time nor energy to engage in other activities besides caring for the family member who prior to this had been important sources of support for the carer.
It is therefore no wonder carer’s importance is now being recognised through the Community Care Act 1990, The Carers (Recognition and Services Act) 1995 stipulates that whilst an assessment must be for the person with dementia, an assessment must also be carried out for the carer to see his or her needs. Moreover another factor that usually causes depression in carers that look after family members with dementia is the carer’s relationship with the person suffering with dementia and the living arrangements.
Spousal carers are the most affected with depression and have more depressive symptoms than other carers of patients who have other conditions (Baumgarten et al. , 1992). Furthermore carers who live with their parents also experience high levels of depression than those who live apart from the ones they give care to. Carers who look after family members with dementia at times may not seek help until things have progressed to such an extent that help will have little effect. However this does not mean that help is not available. There are several coping methods that could be used to cope with depression for carers of people with dementia.
A selection of interventions have been developed which support carers. These interventions include training and education programmes, Education plays an important part in the coping strategy for carers with depression caused by giving care to someone with dementia. A higher level of carer education regarding dementia improves carer’s feelings of being able to look after a family member with dementia. Studies have shown that unrealistic expectations of a fairly member with dementia increase a carer’s risk of depression and on the other hand a reduction of carer’s expectations is linked with lower rates of depression. Coppel et al, 1985). In other words carer’s who maintain positive feelings towards their relatives have a greater level of commitment to caring and a lower level of perceived strain. Furthermore carers who experience feelings of powerlessness, lack of control and unpreparedness have higher levels of depression (Coppel et al, 1985). However (Pinquart and Sorensen, 2003) believes that the most effective treatments in depression of carers appear to be a combination a combination of education and emotional support.
Moreover teaching cares of people with dementia effective behavioural methods of coping with stress will help reduce anxiety and reliance to treatment. As such their behavioural skills and self-management training programmes significantly result in lower patient behavioural problems and as such improve the carer’s mood. The use of psychotherapy benefits patients with early dementia but, because of cognitive loss, therefore some adaptation and modification of the method is usually required and the involvement of carers is often necessary. Cognitive theory is in part of behaviour theory and therapy.
The theory looks at defining and addressing people’s problem behaviours, in particular social phobias, anxiety and depression (Payne, 2005). It also focuses on specific behaviour that worries clients and others around them. If behaviour is changed the concern is removed. The theory is important for workers in that it makes a clear analysis and description of problems, based on direct observation. The assessment process methods in this case are clearly defined (Gambrill, 1995). Mrs XL would greatly benefit from such an intervention, as it would look at the cognitive behaviour of her husband and herself.
Cognitive behavioural family intervention in most cases has had significant results in carers of people with dementia and in most cases has a positive impact on the behaviour of the person with dementia. Carers who have passive coping methods are usually linked to greater carer burden and carers who use escape avoidance methods of coping are more likely to have more depression and interpersonal conflicts (Pruchno and Resch, 1989). Seeking spiritual can be considered a coping resource. Religion plays an important part in the coping strategy and is often present at higher levels for African Americans and Hispanics.
In a study carried out in the United States of America that looked at older African Americans and older Mexican Americans. They observed that the role of spiritual support reap higher spiritual rewards and rely on prayer and church support amongst carers who suffer from depression as a result of looking after relatives with dementia (Picot et al, 2004). Religion also plays an important part as religious involvement brings about more access to social support. Although Mrs XL is a full practicing Hindi where she lived there was no temple to which she could go to practice her faith.
The nearest place that she could go to was 50 miles and now that she was not that her mobility was limited it was difficult to seek solace in her faith. Having a positive aspect to the role of being a carer for a relative with dementia is an important factor as a coping strategy. The pride in fulfilling the spousal responsibilities, the closeness with the person there are looking after and the general satisfaction of being competent to look after a relative with dementia. These apparent uplifts of giving care to a relative with dementia are associated with lower levels of carer burden and depression.
Another form of intervention is that of information- technology based and other formal approaches to planning care, which takes into consideration specific needs of carers. This is done using specialised nurses and other health care professionals (Woods, 2003). Respite is also another form of coping alternative that can be used to help carers who suffer from depression looking after a relative with dementia and cannot be underestimated. Carers themselves see respite as a very important service for relatives with dementia.
Having information about various respite alternatives, the availability of affordable, reliable and having flexible programmes that can manage behavioural problems is an important factor in trying to cope with caring for a relative with dementia. This has been observed to enhance the well being of carers who look after relatives with dementia (Bloch et al, 1998) who examined the effect of respite care and defined it as a temporary institutionalisation (in both cases for a period of two weeks) of the person with dementia in a nursing home and in a hospital. Respite care provides a positive effect on the burden experienced by the carer.
This also has a positive effect on the cognitive and physical functioning of the person with dementia. When Mrs XL was offered this service for her husband she declined the offer at first, but after having discussed the advantages for her husband and for her she took up the offer. In a study that looked at the effect of individual support for the carers at home, that is information and emotional support combined with exercises to help them relax. The group that was receiving emotional support improved significantly on mood, whilst the other group showed signs of strain and symptoms of depression.
Furthermore by taking relatives who suffer with dementia to day centres helps carers cope well with looking after someone with dementia. In conclusion the impact of caring for a relative with dementia brings the risk of mental ill health to the carer in the form of emotional stress, symptoms of depression and most significantly clinical depression. The consequences of this may have negative effects on the quality of life for the carer and the person with dementia. This will also affect on the standard of care given to support the person with dementia.
On the other hand carer’s depression is a serious public health problem leading to substantial costs, which differ in regards to society for example, early entry into long term care. The challenge to health and social care providers is to recognise this symbiotic collaboration to support it. The quality of care needs to be delivered to both carer and the person being cared for, if a meaningful package of care is to be allocated. Professionals involved in dementia care need to be vigilant to reduce carer burden and to detect early signs of compromise in the carer’s mental health.
Personal education for carers usually in the form of advice about dementia itself and the warning signs of carer stress, such denial, and withdrawal from social interaction, anger, anxiety, depression exhaustion and insomnia is beneficial to everyone involved. The needs of carers are increasingly being recognised across agencies, more so in the United Kingdom, this has become integral to the Unified Assessment Process in the statement that carer are entitled to an individual assessment in their own right, re enforced by the Community Care Act 1990.
The multi agency stakeholder document which is Draft National Service Framework for Wales 2005, points to the vulnerability of carers and stipulates that specialist services for people with dementia should include ‘interventions for carers, for example advice and training that is structure, counselling services or respite breaks from looking after someone with dementia’. Caring for the carer is important as caring for the individual with dementia for a successful outcome in difficult circumstances. Bibliography Bloch, S. , Herman, H. , Murphy, B. (1998) Family Caregivers: Disability, Illness, and Ageing. Allen & Unwin.
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