BetterConduct

The results of one study’s analysis found evidence of three general caregiving styles: Supportive, Nurturing, and Non-adaptive (deVugt et al, 2004). Ninety-nine patients with dementia and their carers were interviewed to determine caregiver management styles and the effect on their patient’s behavior over a period of one year. The NPI (Neuropsychiatric Inventory) was used to measure behavioral disturbances in the individual with dementia. Repeated measures to determine the relationship between caregiving style and behavior were conducted. The most prevalent caregiving style, present in 53% of the caregivers, was labeled Supportive. This group was comprised of caregivers that supervised stimulating pursuits, encouraged social, physical, and household activities, and participated with the client. They demonstrated a cautious approach to behavior management while providing a safe environment that minimized patient frustration. This supportive strategy reduced the risk of hyperactive behavior and the caregiver approached developing issues with patience and calm.

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The second most prevalent strategy identified was Nurturing and included 30% of the caregivers. In this caregiving style, the caregiver and client were not equals: the caregiver did most of the chores and reported a lower level of patient activities. This style can be upsetting to the relationship of a spousal dyad as roles may be reversed or distorted. Nurturing caregiving style can be viewed as a parent/child approach. More women than men used this strategy at a rate of 5 to 1.

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The third strategy in 17% of the caregivers surveyed is called Non-adapting. The caregivers using this strategy showed a lack of understanding and unacceptance of the caregiving situation. These caregivers responded to behavioral issues with confrontation or ignoring and exhibited impatience, irritation, and anger toward the client. The caregivers that used this strategy had more depressive symptoms, more neuroticism, and lower self-confidence over time. But this was not all. The non-adapting caregiver reported more hyperactivity symptoms and other BPSD (Behavioral and Psychological Symptoms of Dementia) in the one they cared for. Interestingly, the patient even showed an increase in agitation and hyperactivity over time. Another study (Hamel et al, 1990) showed poorer interpersonal relationships resulted in increased aggression in community dwelling individual with dementia.

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The findings of the deVugt et al (2004) study are intriguing, but what specific strategies can be used that result in a positive effect on both the caregiver and the IWD? Can specific ways of coping decrease caregiver anxiety and lower psychological distress? Can specific caregiving strategies enhance cognition and ADL (activities of daily living) functioning?

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In 1985, a test to measure coping styles, the Ways of Coping Checklist (WCCL) was developed from Lazarus’ transactional model of stress (Vitaliano et al, 1985; Lazarus RS, 1966). This model describes an event as stressful if it is appraised to be potentially dangerous to one’s well-being. After this initial assessment of an event, an individual decides what coping strategy to utilize. Coping consists of the behaviors and practices of individuals as they act on their own behalf (Pearlin et al, 1990). The original WCCL had seven scales: the first is problem focused coping (management of the source of stress) and the remaining six are types of emotion-based coping (regulation of stressful emotions resulting from a stressor). As mentioned in the previous section, Pearlin et al (1990) elaborated on Lazarus’ model with primary and secondary stressors. Primary stressors would be characteristics of the care recipient—behavior, ADL level, and extent of cognitive impairment. Secondary stressors are related to the role of caregiving – work or social conflicts, financial expenses, etc.

 

The WCCL scales were based on an analysis of the results of 62 spouses of patients with AD (at the time of this study, AD was referred to as Senile Dementia of the Alzheimer’s Type). The test requires the spouses of SDAT to imagine a stressful event and base their responses on that event. It is telling to note that not all 62 of the spouses indicated their IWD’s illness as a stressful experience --80% did, 20% did not. In fact, in this sample population, 42% referred to an experience or event that was directly related to the spouse, 36% identified the source of stress as “having to do extra” because of the disease, and 20% used a stressor unrelated to dementia. Forty-five percent of the caregivers met the Beck Depression Inventory research diagnostic criteria for minor or intermittent depression at the time of the test. Further studies have also used the WCCL to decipher the effect of caregiver coping strategy on themselves and their patient. The revised WCCL is a 57-item questionnaire in which caregivers rate how frequently they use various coping behavior in addressing a problem. An analysis of the data revealed 8 scales: Problem Focus, Seeks Social Support, Avoidance, Wishful Thinking, Blames Self, Blames Others, Counts Blessings, and Religious Coping. The most frequently reported caregiver strategy in the 2013 Tschanz analysis of 226 caregivers in Utah was Counts Blessings, followed by Problem Focus and then Religious Coping. These caregivers had annual reassessments for up to 6 years and had an average age of 67; their patient had mean age of dementia onset of 82; 73% had AD, 29% VaD, and a little more than half (53%) were female.

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Problem Focused coping strategy could include both Supportive and Nurturing caregiving styles as described in the previously mentioned deVugt et al (2004) study. But a more specific definition evolved based on the test items themselves. These caregivers showed self-reliance and flexibility in modifying the environment—or themselves-- in response to a problem or issue. They focused on strengths – their own and those of their client’s –to solve issues as they arose. They took things one step at a time, developed a plan of action and followed it through, and did not let feelings interfere with what needed to be done. They admitted they may have bargained, compromised, or fought for what they wanted or to get something positive from the situation, and developed a couple of different possible solutions to attempt rather than focusing on one. Other items they responded to included changing something or themselves in a way so things would work out or that enabled them to deal with the situation better. They may have had to accept the next best outcome to what they originally wanted.

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Caregivers who utilized Problem Focused coping were less likely to be depressed (Vitaliano et al, 1985 and Piercy et al, 2012). Other studies have also shown this method to be associated with caregiver well-being and greater satisfaction in the caregiver role (Kramer, 1993, and Kneebone, 2003). The focus on strengths of both the caregiver and the IWD resulted in higher self-rated health status and reduced relationship strain. But it gets even better than that. There were positive impacts to the IWD, too. Problem Focused coping was the only caregiver coping strategy that was associated with both slower cognitive decline and slower ADL/functioning decline. That warrants repeating. This strategy also impacted the IWD by decreasing the rate of cognitive and functional ADL decline. Amazing!! Regular use of Problem Focused coping compared to not using it at all resulted in a decrease of 2 points per year on the MMSE and 1.65 points per year slower worsening on the CDR-sb (Tschanz, 2013). In addition, it is thought that positive spousal or carer interaction and high caregiver commitment delays institutionalization. Other studies have maintained this effect (Wright, 1994).

 

Emotion-focused coping strategies did not have the same effect. Let us examine these individually. Seeks Social Support referred to looking to others for advice, assistance, and/or sympathy. This scale involved talking to someone about feelings or information or asking for advice and following it. It also included accepting understanding or sympathy from someone. This scale was associated with anxiety in the caregiver (Vitaliano, 1985). There were positive effects for the IWD, however, when this strategy was used with both Problem Focus and Wishful Thinking. When combined, this coping approach resulted in slower functional decline as measured by the CDR-sb (Tschanz et al, 2013).

 

Blamed Self coping strategy included carers who felt responsible for the problem. The caregiver criticized or lectured themselves and had the belief that they had brought the problem on themselves. This scale was also associated with increased caregiver anxiety (Snyder et al, 2015). Another study associated this way of coping with depression in the carer and a negative psychological outcome (Kramer, 1993).

 

Wishful Thinking is self-explanatory. Carers wished they could change the situation. They hoped for a miracle, wished they had other characteristics (were stronger, felt differently, and/or more optimistic) or that the situation itself would disappear. They daydreamed or fantasized about the outcome of the situation. As might be surmised, depression was related to this scale (Vitaliano, 1985 and Kramer, 1993). Carers showed increased anxiety; and Wishful Thinking was associated with more health issues in the caregiver (Snyder, 2015). For the client, this coping strategy was associated with shorter survival rates (Tschanz, 2013). The caregiver may be less involved and less available to give person-centered care.

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Avoidance could be associated with the Non-adapting strategy mentioned earlier (de Vugt et al, 2004). This scale included denial, keeping feelings to oneself, trying to forget by compensating with eating, drinking, smoking, taking medication or avoiding others. Some caregivers indicated they slept more or ‘got mad at people/the cause of the problem’. Again, this scale was associated with depression and negative psychological outcome in the carer (Kramer, 1993).

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Spirituality/Religious coping is the third most frequently utilized coping strategy. It includes forgiveness. Some studies indicated Counts Blessings to be a separate coping style. This would be the most reported strategy if considered as its own category. The use of Religious Coping was associated with reduced caregiver anxiety over a 1-year period (Cooper et al 2008). For the IWD, when Counts Blessings was used in conjunction with a Problem Focus strategy, a slower cognitive decline on the MMSE occurred but no slowing to functional decline was observed (Tschanz, 2013).

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Does caregiving style affect the caregiver and the IWD? Absolutely. How helpful it would be for a caregiver to be given the knowledge of beneficial coping strategies at diagnosis! We owe it to our IWD to inventory or at least make note of our caregiving style and coping strategies and to try to adjust them accordingly if necessary. We also owe it to ourselves.

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Sources:

deVugt M, Stevens, F, Aalten P, Lousberg R, Jaspers N, Winkens I, Jolles J, Verhey F.  Do caregiver management strategies influence patient behavior in dementia? Int Geriatr Psychiatry 2004; 19:85-92.

 

Hamel M, Gold DP, Andes D et al. Predictors and consequences of aggressive behavior by community-based dementia patients.  Gerontologist 1990; 30(2):206-211.

 

Kramer BT.  Expanding the conceptualization of caregiver coping:  The importance of relationship-focused coping strategies.  Family Relations 1993; 42(4):383-391.

 

Lazarus RS.  Psychological stress and the coping process.  New York: McGraw Hill, 1966.

 

Pearlin LI, Mullan JT, Semple SJ, Skaff MM.  Caregiving and the stress process:  An overview of concepts and their measures.  The Gerontologist 1990;30(5):583-594.

 

Piercy K, Fauth E, Norton M, Pfister R, Corcoran C, Rabins P, Lyketsos C, Tschanz J.  Predictors of dementia caregiver depressive symptoms in a population:  the Cache County Dementia Progression Study.  Journals of Gerontology Series B:  Psychological Sciences and Social Sciences, 2013;68(6):921-926.

 

Snyder CM, Fauth E, Wanzek J, Piercy K, Norton M, Corcoran C, Rabins P, Lyketsos C, Tschanz J.  Dementia caregivers’ coping strategies and their relationship to health and well-being:  The Cache County study.  Aging Ment Health 2015;19(5):390-399.

 

Tschanz J, Piercy K, Corcoran C, Fauth E, Norton M, Rabins P, Tschanz B, Deberard M, Snyder C, Smith C, Lee, L, Lyketsos C. Caregiver coping strategies predict cognitive and functional decline in dementia:  the Cache County Dementia Progression Study.  American J of Geriatric Psychiatry, 2013;21(1):57-66.

 

Vitaliano P, Russo J, Carr J, Maiuro R, Becker J.  The Ways of Coping Checklist:  Revision and psychometric properties.  Multivariate Behavioral Research 1985;20:3-26.

 

Wright LK. Alzheimer’s disease afflicted spouses who remain at home: can human dialiectics explain the findings?  Soc Sci Med. 1994;38:1037-1046.