The term "caregiver burden" refers to a people's emotional response to changes and demands that occur as they give help and support to the older person. Also see Alcohol and Caregiving
The vast majority of caregivers (87%) are what gerontologists refer to as “informal caregivers”, (in other words, unpaid persons). Most caregivers are spouses, but family members and friends can also be caregivers.
The Role of Alcohol in Caregiver Burden
Alcohol use has a role in caregiver burden in two different ways. In some cases, alcohol is the direct or indirect cause of the health or other problems that the person receiving care is experiencing (e.g. the older person may have peripheral neuropathy, or esophageal cancer resulting from long term alcohol use; excessive drinking can raise blood pressure, leading to increased risk of stroke; or the older person has other health problems and also has alcohol use problems). In other cases, the person giving care is struggling with giving care, and alcohol use becomes one of the person’s ways to handle the caregiver burden/ stress.
There is considerable known about caregiving and caregiver burden (particularly as it relates to giving care to people who have dementia), but very little is known about caregiver burden and alcohol problems, or even caregiver burden and alcohol related dementia.
In people who have dementia, there are a variety of changes evolve as the disease progresses-- the person may experience the loss of self esteem, dependency, and there can behaviour difficulties such as agitation, aggression or delusions.
In other kinds of caregiving situations, there can also be changes – the older person may have a progressive disease, the symptoms may become more severe as time goes on, or the older person can find it difficult doing more things. Sometimes the personal circumstances of the caregiver may change (his or her health can change from good to fair, or fair to poor).
When looking at caregiver burden, it is important consider what is happening psychologically, physically, financially and socially in the life of the person who is giving care, as well as what is changing for the older person receiving the care. Are these changes causing strain for the person giving care, and if so, how much? The degree of this strain is measured and referred to as caregiver burden.
The degree of caregiver burden may be made worse by a number of factors, and it can be reduced by other factors. It tends to worse when
- the people involved are socially isolated,
- the person give care lack of knowledge about the condition,
- the person giving care has limited interpersonal skills,
- there are long standing immature coping patterns,
- there is strain on the relationship ( before the condition started),
- there are guilt feelings (e.g. over a decision to institutionalize the person) and high expressed emotions.
But there are also protective factors that help reduce the likelihood of caregiver burden. These include
- help from other family members,
- the ability to use problem-focused coping strategies,
- availability of support from the community and
- knowledge about the alcohol condition and why the alcohol use might cause the person to think or behave in certain ways and the skills needed to cope with theses problems.
Caregiving and dementia
Spouses and family members giving care to a person with dementia are nearly twice as likely to have symptoms of depression compared with caregivers of non-demented people. They also have higher rates of chronic illness and are twice as likely to be using psychotropic medications for depression or anxiety than people who are giving care to someone without dementia. (Canadian Study of Health and Aging)
How Much Strain?
One of the tools used to help measure caregiver burden is the Zarit Caregiver Burden Index. The original scale has 22 items; there is also a 12 item scale. It looks at personal strain, which includes things like whether the caregiver feels she or he has enough time to self, feels stressed or angry at the person receiving care, has strained relations with others ( e.g. family), feels a lack of privacy, feels his or her personal health is suffering, social life is suffering, or feels a loss of control in their own life. It also looks at role strain: where the caregivers feel they could do more for the other person, do a better job of caring, or are feeling uncertain what to do.
Does the Presence of Alcohol Problems Cause Caregiver Stress?
There really isn’t any literature specifically on this topic of alcohol and caregiver strain or burden, but drawing from the caregiver burden literature, it seems very reasonable to assume that when a person receiving care has alcohol related problems, that the person giving care is at some risk of feeling burdened (“I can’t handle this”).
In some cases the person giving care becomes increasingly socially isolated. Having an alcohol problem is a stigmatized condition, and the spouse or family member may socially isolated because they are trying to hide the problem (“the family shame”) from others, or because others have withdrawn from them (in the stigma literature, this is known as "fear of contagion"). Traditional caregiver support groups may not be very receptive to a person disclosing that the care- receiver’s health problems is from long term alcohol use.
Long term alcohol problems can cause a lot of functional disability. We know that functional disability is a key determinant (even more than severity of dementia) for a person being placed in care facility. For example, an individual who becomes incontinent * will be more likely to create a high level of caregiver-burden than someone with significant cognitive impairment but without this type of functional disability.
A person giving care who also has to cope with nocturnal behavioural problems * would be under far greater pressure, both physically and emotionally, than someone who is able to get a good night’s sleep. In the Canadian Study on Health and Aging, 40% of caregivers cited behavioural problems and feeling overwhelmed as reasons for placing person in an institution.
Family members who are juggling work, caring for their growing children, and caring for a parent with an alcohol related problem can easily feel simply “stretched too thin”.
Family members may feel very ambivalent about giving care (“I really don’t want this job, but someone has to do it”), and there can significant disagreements in some families about the best way to give care when alcohol is part of the equation (e.g. arguments -- “Look, it’s better for me to buy the bottle and keep the peace with him, so that at least he is not trying to cross the four streets to get to the liquor store”)
Lack of knowledge about the nature of alcohol problems in later life (what behaviour is caused by the alcohol, and what is caused by other factors) is an important stressor for spouse or family, because it often leaves uncertain what to do. There are a lot of misconceptions and part-truths out there, such as reflected in this comment from one older woman:
“Yes, I know he is getting more violent and I know it not safe for me, but I can’t leave him. They tell me alcoholism is a disease. You can’t leave your husband if he has a disease.”
Even service providers working with older adults on alcohol problems are always learning more about the issue; what might have been accurate information and practical advice five years ago may need to be reconsidered.
There can be disagreements between family members and service providers about how best to help: “Why can’t you just make her stop.”
Part of caregiver burden is related to much care the person is giving (quantity), but often the quantity of time spent helping and supporting the spouse or parent is less important to feeling burdened than how the person interprets the older adult’s behaviour and situation. There are a lot of negative feelings in families that are associated with the presence of alcohol problems. For example, the person giving care may perceive that the care receiver is attempting to manipulate him or her; may feel that unreasonable requests are being made; may feel being taken advantage of; may feel that increased demands being made on him or her.
Each of those feelings also happens to be associated with aspects of caregivers who feel burden.
How Bad Can the Stress Get?
The caregiver literature consistently points out that giving care to a person who is cognitively impaired can be highly stressful. More than 80% of Alzheimer caregivers report that they frequently experience high levels of stress, and nearly half say they experience depression. While most caregivers do not become physically abusive, most have reached points where they feared becoming so.
Caregivers who are depressed are more likely to engage in harmful acts and caregivers who had a poor relationship with the individual prior to the changes in the care recipient’s health are more likely to be verbally abusive than people who had good relationships.
Helping Spouses and Families Who Feel Burdened in Giving Care
Again, there is no specific literature on alcohol and burden, but it may be helpful to go back to the factors associated with more or less burden. Some of the strategies may include:
- helping the caregiver self asses how much stress she or he is under;
- helping to reduce social isolation for one or both of them (getting the care receiver out of the house to a weekly support group or to "adult day care" for moderately impaired people with dementia)
- providing the person giving care and others in the family with information about alcohol and aging, particularly as it relates to the specific problems the person is identifying
- helping the person giving assistance to better understand and reinterpret the behaviour that is causing them stress (not necessarily blaming everything on the alcohol) (cognitive behavioural strategies)
- helping the person giving care to establish personal boundaries and develop reasonable expectations of the care receiver, and of him or herself
- drawing in other community or social resources so the person giving care has time for self
- drawing in other supports from family or others who may have a better relationship with the older person
* Information on the connection between alcohol and incontinence, and alcohol’s role in causing sleep problems in older adults ( wakening, sleep apnea, gastro-esophageal reflux disorder) will be available in the future.
Alzheimers Association. Caregiver Stress (Coping). Online at: http://www.alz.org/Caregivers/Coping/caregiverstress.htm Retrieved July 6, 2003
Canadian Study of Health and Aging. Patterns of caring for people with dementia in Canada. Can Journal on Aging 1994, 13(4), 470–487.
Cooney, C. & Mortimer, A. (Winter,1995). Elder abuse and dementia- a pilot study. International Journal of Social Psychiatry, 41 (4),276-283
Williamson, G.M. & Shaffer, D.R. (June, 2001). Relationship quality and potentially harmful behaviors by spousal caregivers: how we were then, how we are now. Psychology and Aging. 16 (2), 217-226.
Zarit SH, et al. (1980). Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist, 20(6), 649–655
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