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P6. Family carers

Detailed Programme, abstracts and presentations

P6.1. One Carer’s Story: A 20-year video case history

Daniel D. Christensen

We recorded one carer’s journey by yearly video interviews spanning 20 years. Recording began at the time of Harold’s diagnosis, followed him and his carer/wife, Marge, over the 10 years to his passing and then concluded with a final taping 10 years later (20 years from diagnosis). Her story is like many others – puzzlement and self-blame when Harold’s symptoms began, relief and understanding with the diagnosis, financial hardship, personal embarrassment, family turmoil over the question of nursing home placement and remarkable fortitude as years pass and Harold slowly deteriorates. The presentation is enhanced with family photos and passages from Marge’s personal journal in addition to the video interviews of both Harold and Marge. The benefit to carers who have seen this presentation lies in their understanding, empathy and identification with Marge through her caring years and the hope embodied in the final (20 year) interview where she has fully recovered – she has remarried, her life is happy and fulfilled and she understands and accepts her years of caring as a time of growth that has blessed her and her family with a deeper understanding of life.

P6.2. Adjustment processes in caregivers of people with Alzheimer's disease

Ana Margarida Cavaleiro, Isabel Leal

Caregivers could choose adjustment processes based on isolation as a way do deal with Alzheimer’s disease.

As the adjustment processes result from the emotional relationship between variables such as depression and perceived stress (Gilley et al., 2005), the investigations have considered important to understand the implications of coping strategies, compared with other variables, to improve the caregiver’s processes of adjustment to the role of carers (Kneebone & Martin, 2003). However, studies have not reflected about the influence that these variables have in the process of adjustment, or how the psychosocial variables relate to each other and with the coping strategies adopted and, consequently, what is the relationship of both with the various adjustment processes of caregivers.

Subsequently, this study aims to understand the process of adjustment of caregivers of people with Alzheimer's disease (generally and in specifying types of caregivers and care), through the relationships established between coping strategies, psychosocial variables, including: Anxiety, Depression, Stress, Satisfaction with Perceived Social Support, Quality of Life, Self-efficacy and socio-demographic variables.

It was considered as a measure of emotional adjustment the compatibility between the different variables (individual variables: self-efficacy; situational variables: social support; outcome variables: anxiety, depression, stress and quality of life) and coping strategies.
With this presentation, we intend to reflect on the results of this comparative and correlational study between formal and informal caregivers, in order to establish intervention strategies that can provide caregivers with skills for more appropriate adjustment processes in order to a greater adaptability to the Alzheimer's disease and to the role of caring, as a way to avoid caregiver’s isolation.

Gilley, D. W., McCann, Judith J., Bienias, J. L. & Evans, D. A. (2005). Caregiver psychological adjustment and institutionalization of persons with Alzheimer's disease. Journal of Aging & Health, 17(2), 172-189.

Kneebone, I. I. & Martin, P. R. (2003). Coping and caregivers of people with dementia. British Journal of Health Psychology, 8(1), 1-17.

P6.3. Learning from caregiver mistakes

Ann Pascoe

Speaker: Ann Pascoe, caregiver to husband with Vascular Dementia living in the rural Highlands of Scotland.

Objective: to learn from caregiver mistakes during the early to middle traumatic stages of dementia.

Method: to examine and learn from caregiver mistakes by (a) seeing the man and not the illness, (b) recognizing and understanding the PWD’s fantasy world (c) daring to take risks and (d) identifying grief suffered by the caregiver.

Conclusion: by taking a holistic approach to the PWD, caregiving mistakes can be used as learning curves to better the lives of both the PWD and the caregiver.

P6.4. Across the cognitive impairment continuum increasing patient dependence is associated with a subjective increase in caregiver burden

Jacqueline Buchanan, Loretto Lacey, Jonathan de Courcy, Daniel Shaw

Background: Alzheimer’s disease (AD) in its early stages is often diagnosed as mild cognitive impairment (MCI) or pre-dementia Alzheimer’s. As cognitive impairment progresses individuals become increasingly dependent on caregivers to help them with day to day living.

Objectives: To examine the association between patient dependence as measured with the Dependence Scale (DS) and caregiver measures of subjective burden (measured with the Zarit burden interview, ZBI) across the cognitive impairment continuum (MCI and AD dementia patients).

Methods: Data were drawn from a cross-sectional study of 443 physicians from France, Germany, Spain and the UK. MCI patients were defined by a diagnosis of MCI or pre-dementia AD made by the physician. AD stages were defined by an AD diagnosis and mild MMSE>19, moderate MMSE10-19 or severe MMSE<10. Where no MMSE score was available mild, moderate and severe dementia stage as perceived by the physician was used. Where possible, for each patient record (N=383), caregivers were asked to complete a caregiver questionnaire. Correlations between dependence (DS) and caregiver burden (ZBI) were performed. Mean comparison between patients groups was done using one-way ANOVA with bonferroni correction for multiple comparison. A stepwise ordinary least squares (OLS) model was created to identify significant drivers of ZBI using various patient and caregiver demographics and characteristics.

Results: 383 patients were classified into four mutually exclusive groups; MCI (N=48), mild AD (N=121), moderate AD (N=161) and severe AD (N=53). There were significant differences (p<0.001) in mean score on dependence scale, between mild AD (6.60 ± 2.86), moderate AD (9.12 ± 2.68), and severe AD (11.17 ± 3.37) patients. There was no significant difference between DS scores for mild AD patients and the MCI patients (6.30 ± 3.1). For the ZBI, the mean scores for mild AD (29.14 ± 16.63) and moderate AD (40.13 ± 15.95) were significantly different (p<0.001), however, there was no significant difference between MCI and mild, moderate, and severe AD. For the total population patient dependence and caregiver burden were positively correlated (Pearson’s 0.3362, p<0.001). Furthermore, dependence (DS) was found to be a statistically significant predictor (p<0.001) of caregiver burden (ZBI) across the total population by the stepwise OLS model.

Conclusion: A strong relationship exists between patient dependence and the burden that this puts on their caregiver. These results suggest that as patient’s progress across the continuum of AD dementia, patient dependence increases and the burden to the caregiver increases. A significant increase in caregiver burden occurs when a patient progresses from mild to moderate AD dementia.

P6.5. Quality of life of caregivers of patients with dementia

Jerzy Leszek

Alzheimer’s disease and related syndromes have heavy social and human consequences for the patient and his/her family. Beyond the neuropsychiatric effects of specific therapies for dementia, one of today’s challenges is the Quality of Life (QOL) for both patients and especially their informal caregivers. Caring for an Alzheimer’s patient can cause emotional, psychological and physical problems. As the disease progresses, caregivers often find themselves cut off from friends and regular social activities. Caregivers of persons with dementia experience stressful demands, especially because of the length of time that care is required, the behavioural symptoms of patients, and severity of decline of patients during the course of the illness. Insufficient attention has been given to how end-of-live care affects caregivers or to caregivers responses to the death of the patient. A study conducted by some authors (e.g. Schulz et al., 2010) indicated that caregivers needed intervention and support services were needed most often immediately before the patient’s death. Caregivers may need help in resuming their own lives after the patient’s death. Psychiatrists who are called in as consultants or who have a long-term relationship with the patient or caregiver are uniquely positioned to assist the caregiver with his or her emotional needs that are associated with end-of-life care or the patients’ demise. According to literature and our experience, the caregiver’s QOL is correlated to the QOL of the patient they cared for, the importance of behavioural disorders and the duration of dementia evolution. Women caregivers have a worse QOL and more depression than men. Assessment of parameters influencing caregiver’s QOL and its possible link with patients QOL are very important because of necessary interventions to improve QOL.



Last Updated: Wednesday 26 October 2011


  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene