C19 IMPACT OF LONG‐TERM SURVIVAL ON CARERS: LESSONS FROM DEMENTIA CARE
Oyenbode J
University of Birmingham / Birmingham and Solihull Mental Health Trust, Birmingham, UK
E‐mail address for correspondence: [email protected]
The consequences of any devastating progressive condition reach beyond the individual to those who are close to them, yet the well‐being of those who become carers is key to the welfare of the ‘patient’. Health services therefore need to consider the impact of illness on the whole family and provide support and care for caregivers in their own right. This paper draws on the large body of research on the impact of caregiving for those with dementia, raising parallels and differences from motor neuron disease (MND). The aim is to raise awareness in service providers and stimulate discussion with people with MND and their carers about how best to meet carers' needs.
All of us in close relationships care in a practical and emotional sense for the other. However, in the presence of debilitating illness, the balance changes. The disabled individual is forced into dependence and the able partner into caregiving. The additional activity and responsibility can cause significant stress and distress.
In dementia care, carer stress (subjective burden) is not directly related to the level of practical help (objective burden) but is influenced by other factors. This is also likely to be the case in MND. Pearlin et al.'s stress‐process model (1) suggests five principal areas. These are: 1) background contextual factors, such as quality of prior relationship; 2) primary stressors arising directly from care needs (e.g. broken sleep or heavy lifting); 3) secondary role strains arising from clashes with other aspects of life (e.g. competing requirements to work or care for teenage children); 4) secondary intrapsychic strains (e.g. impact on self esteem); and 5) moderators, such as degree of social support. Research has defined particular risks and buffers for dementia carers using this framework and the same would be possible and potentially useful for MND care. The broader conceptual model of Hall (2) which includes consideration of the underlying beliefs and values of the carer may also be of value.
Systematic assessment can lead to helpful psychosocial interventions. A meta‐analysis of interventions for dementia carers (3) found benefits for the carer and person cared for. The three main critical success factors were that the intervention should be for both carer and care recipient, should be intensive, and be individually tailored.
This paper will give a tentative outline of stressors that may affect MND carers and suggest directions for future research and intervention.
References
- Pearlin LI, Mullan JT, Semple SJ, et al. Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist 1990;30:583–94.
- Hall J. Towards a psychology of caring. British Journal of Clinical Psychology 1990: 29:129–44.
- Brodaty H, Green A, Koschera A. Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 2003;51:657–64.
C20 THE IMPACT OF AMBIGUOUS LOSS AND EMOTIONAL LABOUR ON FAMILY CARERS
Ray RA, Street AF, Love AW
La Trobe University, Melbourne, Australia
E‐mail address for correspondence: [email protected]
Background: Assisting family caregivers to deal with the cumulative losses and the emotional cost of caring for a loved one living with ALS/MND is important for the well‐being of both the carer and the patient.
Objectives: As part of a larger study, this paper examines family carers' loss and its impact on their ability to provide effective care in ALS/MND.
Methods: Data were collected from family carers through a mail‐out caregiver networks scale survey tool, and ethnographic case study of primary caregivers. The tool included items pertaining to relationships with family and friends, financial concerns and recent changes in health. One‐way analysis of variance was undertaken across all items of survey data. Family carers participated in audiotaped interviews in their homes and field notes were collected at three time‐points over a 10‐month period. Description and conceptual ordering were used to analyse the qualitative data.
Results: A total of 74 carers participated in the survey (51 females and 23 males; mean age range 55–64 years). Eighty‐six per cent of the carers were spouses, 9.8% were daughters, and 1.4% were sons. When loss and length of time caregiving were analysed, there was a trend towards increasing loss as time spent caring increased, across all survey items. The main predictors of loss were relatives not keeping in touch (p = 0.006), difficulties in relationships with friends (p = 0.013) and financial difficulties (p = 0.015).
Fourteen primary carers all of whom were the partner of the patient, volunteered to be interviewed (three males, 11 females; mean age of 59.92 years). Coded interview data correlated with survey findings and provided insight into other losses. Loss of relationships through functional changes and redefinition of roles occurred among family members and their friends. Ambiguity about the changes occurring in their loved one made it difficult for family members to make meaning of the situation, restricting their ability to manage care. The physical and emotional demands of caregiving left little time for carers to grieve and they tended to keep their feelings to themselves to protect others, thus increasing their emotional labour.
Discussion and conclusions: Many of the losses experienced in ALS/MND are common to other life‐limiting illnesses; however, the ambiguous nature of loss arising from the uncertainty associated with disease progression, compounds loss. Family carers' experiences of emotional labour and ambiguous loss often go unnoticed but have a significant impact on their ability to continue to provide care. Health and social care professionals are well placed as people, independent of the family relationships, to support carers in discussing their loss experiences. Strategies such as identifying a possible confidant within the social support network and providing connections to other carers may also enable family carers to manage loss more effectively.
C21 INFORMAL CARERS AND THEIR NEED FOR INCREASED EMOTIONAL AND PRACTICAL SUPPORT
Mockford C, Jenkinson C, Fitzpatrick R
University of Oxford, Oxford, UK
E‐mail address for correspondence: [email protected]
Background: Literature has shown that informal carers can experience poor mental and physical health while caring for a close relative or friend diagnosed with MND (1). Carers' reporting of ill health often appears to be related to the number of hours spent caring (2) particularly with the introduction of tracheostomy ventilation (3), which can increase both responsibility for, and time spent with, the patient. There has been a recent shift in UK legislation to give greater attention to the needs and wishes of carers (4) and there is now a need to engage with the individuals involved on how services can be improved (5). This raises the question of whether or not professional support should be made more available and in what form.
Objectives: The aim of this study was to examine carers' experiences of looking after someone with MND and how they experienced the support offered to them by friends, family, and the statutory, independent and voluntary services.
Methods: Semi‐structured interviews and focus groups were carried out with 23 informal carers of individuals with MND, and transcripts were analysed using a qualitative software package. A disease‐specific questionnaire is being developed from the themes identified from these interviews and is being tested by mail throughout its development.
Results: Two of the major themes emerging from the interviews concern the emotional and practical needs of carers of people with MND. Where the carer's informal support circle is insufficient the carer can become isolated resulting in unmet emotional needs and possibly self‐reported poor mental health. While health professionals often work outside their remit, there appears to be a general need for early or regularly available emotional support and practical advice. Carers may report better coping skills if relationships with support services were improved, particularly with the general availability of a named coordinator. Training and more practical support may alleviate anxiety, build confidence and improve knowledge of support services.
Discussion and conclusions: Not all carers are proactive or confident enough to actively seek support or advice. Some carers may find it difficult to prioritize their own needs or declare they have problems. They are also diverse in their preferences for support. On the whole, it would appear that standardly available emotional support would be welcome from the professional services, and more practical information and involvement in service provision would aid both carer and patient. Carers' self‐reported health may also improve as a result.
References
- Jenkinson C, Fitzpatrick R, Swash M, et al. The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe. Journal of Neurology 2000; 247:835–40.
- Krivickas LS, Shockley L, Mitsomoto H. Home care of patients with amyotrophic lateral sclerosis. Journal of Neurological Science 1997;152(Suppl 1):S82–9.
- Kaub-Witterner D, Von Steinbuchel N, Wasner M, et al. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. Journal of Pain Symptom Management 2003; 26:890–6.
- Department of Health (2004). Carers (Equal Opportunities) Act. The Stationery Office: London.
- Hughes R, Sinha A, Higginson I, et al. Living with motor neuron disease: lives, experiences of services and suggestions for change. Health and Social Care in the Community 2005;13:64–74.
C22 INTENSIVE PSYCHOLOGICAL REHABILITATION IN SMALL FAMILY GROUPS
Rahbek J, Marquardt J, Houman B
Rehabiliterings Centre for Muskelsvind, Aarhus, Denmark
E‐mail address for correspondence: [email protected]
Background: ALS patients in Denmark are followed with the help of regular ambulatory control in an interdisciplinary ALS team at hospitals and by staff from the national Rehabilitation Centre for Muscular Dystrophy (RCfM), who consult patients in their homes to clarify the family's need for rehabilitation. The RCfM consultants coordinate the further course of rehabilitation between the ALS team and the local professionals. Within a year of the diagnosis being made, RCfM offers ALS patients and their relatives a weekend course that deals with the medical, mental, and social aspects of the progression of the disease. During the course, patients and their relatives meet each other and exchange experiences in small groups of patients and relatives, respectively. Experience has shown that they are apprehensive about meeting others with ALS and being confronted with various degrees of the disease, but that they also gain a great deal from the mutual exchange of experience.
About 15–20 patients and their relatives take part in the above‐mentioned courses. Patients differ widely in relation to their pathological state, age, and social background, and these circumstances hinder the exchange of experience. We have therefore developed an intensive psychological rehabilitation course for families in small groups that involves ALS patients and their spouses being admitted to hospital for two days, making sure that the participants constitute a homogeneous group with regard to the progress of their disease, age, and social background.
Objectives: to develop a rehabilitation course where:
Participants can use each other's experience, reduce the fear of the development of the disease, and consider symptoms and problems that are difficult to handle.
ALS patients and their spouses have the opportunity to achieve more mutual empathy and a common understanding of the effect of the disease on family life.
Methods: Four to eight families are referred with the aim of creating a homogeneous group. Participants are interviewed before the course to discover their attitude to the disease and their expectations. An SF36 form is used to describe the quality of their lives. An evaluation interview is held at the end of the course, and after a month there is a telephone interview and another measurement of the quality of their lives with the use of the SF36 form. Consultants from RCfM act as catalysts and supervisors during the course.
Results: The results from the four courses, in which a total of 20–25 families took part, will be presented at the Symposium. The results show that participants felt that the rehabilitation course is what they have got most out of. All participants say that meeting other families in a similar position on such an intensive course has had a great influence on them. They also say that it is important that they took part together with their partners.
Discussion and conclusions: The participants are referred on the basis of a common problem and background. Referral and a clarification of the purpose of the course in relation to the selected group are of decisive importance for the course. Among other things, the results show that an intensive course of psychological rehabilitation in small, homogeneous groups can be a valuable supplement to the other rehabilitation measures.