Effectiveness of the interventions, of support and help by health professionals, on principal caregivers of patients with cancer and/or the most frequent types of dementia: A systematic review

Centre: The Spanish Centre for Evidence Based Health Care Contact Name: Ana Barderas Phone: +34 91 822 22 48 Fax: +34 3877897 E-mail: [email protected] Primary reviewer Name: Carmen Fuentelsaz Gallego (Cataluña) Phone: +34 934894567 Fax: +34 932746162 E-mail: [email protected] Review panel: Secondary reviewer: Isabel Andrés (Cataluña). Phone: Fax: E-mail: [email protected] Starting Date: February 2006 Expected finishing date: June 2007 Reviewers: Background: Principal caregivers A caregiver is the person administering care to a dependent or disabled ill person, mainly at home. Family care of the dependent person has emerged during recent years as an important social problem, as informal care is the most important support received by many dependent elderly people. This provision of help is usually maintained over a long period of time, often without adequate training and support for the implementation of the said care. In general, it is the family who assumes most of these people's care (72%-88% of care). There is usually a main or principal caregiver in every family who responds to their needs, often without a clearly stated agreement of the family members. The responsibility of providing help, day after day, to a relative who is in a delicate condition has a significant physical and psychological impact on the caregivers and the rest of the family's life. Care of a dependent person has been identified as one of the events most likely to produce stress in a family and to each individual within the family unit. Several profiles of caregivers have been identified, but in general it might be as follows; women (83 % of the total), from which 43% are daughters, 22% are wives and 7.5% are daughters-in-law of the cared person (1). The average age of caregivers is 52 years old, most of them are married (77%), 60% share the residence with the cared person, the caregiver does not have a paid professional occupation and most of them do not receive any help from other people. The rotation or replacement of family members is quite low and most of them share the task of care with other family roles such as caring of their children (17%). Diseases resulting in dependence The term dementia describes a number of symptoms caused by disturbances of the brain functions, thus people suffering this disease gradually lose their mental faculties, in general, the speed of such losses varies from one person to another. The most common types of dementia are Alzheimer's disease, dementia associated with multiple heart attacks or vascular dementia, dementia associated with diffuse Lewy body disease, Pick's disease and other frontotemporal dementia. These types of dementia are irreversible. Alzheimer's disease: Currently in Spain there are more than 600,000 persons with Alzheimer's, being the first of the neurodegenerative diseases, as well as the first cause of dementia in the elderly population (2). It is a chronic disease (current average survival at diagnosis is from 8 to 14 years), it is incurable and degenerative, that is, its symptoms will always be worsening with an increasing trend of functional disability of the patient. As a result the demands and burden on caregivers are ever increasing. Vascular dementia: It represents the second major cause of dementia with 20-30% of all cases. It starts suddenly and its course is staggered and fluctuating, appears in a patient who has suffered one or more Ictus, and presents with signs of neurological focality such as walking impairments or strength loss in a limb. Neuroimage tests such as the brain TAC have shown vascular injuries such as strokes. The essential characteristic is that its symptoms depend on the location of the injured brain sites, which are usually irregular. Dementia associated to diffuse Lewy body disease: It represents the second or third cause of dementia with 15-25% of the cases. Its signs are: cognitive function fluctuations, early visual hallucinations, paranoid deliriums, Parkinsonism with low response to treatment and confusion symptoms with an unknown origin. Behavioural impairments appear from the beginning and some patients have hyper sensibility to neuroleptic agents. Pick's disease: It is part of a group of dementias where the impairment is located in the frontal lobe of the brain. Its main characteristic is the neuronal degeneration, which affects mainly the frontal and temporal lobes, shrinking the tissues and causing atrophy. This kind of atrophy makes the difference with Alzheimer's disease. Pick's disease and other frontotemporal dementias are progressive dementias characterised by early and slowly progressing changes in the character and behavioural alterations, that evolve towards a deterioration of the intelligence, the memory and the language, together with apathy, euphoria and, sometimes extrapyramidal symptoms or signs (shivering, walking alterations, etc.). Cancer diseases: Cancer is the second cause of death in our country, as well as in all the developed societies around the world. According to the most recent available data, cancer occurs more in men than in women (58% versus 42%) and the diagnosis age is also higher in men (66,8 versus 64,8) than in women. 47,1% of patients are expected to be alive 5 years after the diagnosis, adjusted by general life expectancy. This percentage varies a lot depending on the location and type of the tumour. Caregivers' problems and impairments It is known that 65% of relatives who directly care for individuals suffering from the aforementioned diseases or other impairments that limit independence, will suffer significant changes in their lives and an important reduction of their physical or mental health. The factors most influencing the physical and mental deterioration are the number of hours dedicated to care and the fact of sharing the residence with the ill elder person (3). The higher the number of behavioural and memory impairments of the patient, the worse is the caregiver's condition. The impairments suffered by these caregivers described in the literature, include: 1. Physical impairments: Caregivers usually have worse health than the family members not having the role of caregiver and they are at risk of having a higher incidence (global figures around 70%) of organic and physiologic problems such as (4): osteomuscular disorders and associated pain, cardiovascular diseases, gastric disorders, immunological system alterations and respiratory problems. As well, they implement less “care behaviour of their own health”, as these people do not: sleep or rest enough; feed themselves appropriately; have enough physical exercise; maintain vaccination schedules; follow medical treatments. Furthermore, they take medications not prescribed by doctors and they smoke or drink too much. 2. Psychological problems: Primary caregivers' mental health appears systematically more affected than physical health in some studies. Some examples are: anxiety, suffered by 54% (nervousness, anguish, and stress); depression or depressive symptoms 28% (sadness, pessimism, apathy); 17% of caregivers suffer hypochondria and other obsessive disorders; 11% show anguish crises (reaching panic); and 11% have suicidal thoughts at some time. Many caregivers (63%) feel swamped and overwhelmed by the problem and 28% feel that he/she give too much importance to irrelevant and trivial daily issues. As well, 17% are more irritable than usual. A great majority, 69% of caregivers, develop psychosomatic disorders (headaches and other aches, anorexia, shivering, gastric disorders, respiratory dyspnoea, cardiac arrhythmias and palpitations, sweating and dizziness, allergies). Some 42% suffer from insomnia or non-refreshing sleep. 17% show chronic fatigue. 11% show objective memory and concentration impairments (not only subjective complaints). 54% of caregivers neglect or abandon other relatives, and 33% abandon personal self-care (hairdressing, feeding, clothes, etc). They also show a lower interest in activities that were important before, in 33% of the cases (neglect of professional activity, friends or even marital relationship). 28% consume too much coffee, tobacco, alcohol, and/or anxiolytic and hypnotic drugs. 3. Burned-out caregiver syndrome: This syndrome consists of a deep emotional and physical waste suffered by the person who lives with and takes care of an incurable chronically ill person. The caregiver is the one who dedicates almost all his/her time to the ill person (even stopping working to taking care of him/her), in general is alone (it is often the case that there are other relatives who do not assist in any way). This situation is maintained over many years often with passive and inadequate strategies to assist the carer. It includes the development of negative attitudes and feelings towards the cared person, demotivation, depression, anxiety, psychosomatic disorders, fatigue and exhaustion not associated with effort, irritability, depersonalization and dehumanization, stereotyped behaviours with inefficacy to resolve real problems, continuous anxiety with the feeling of being overwhelmed by the situation (5-7). The caregiver's burden, among other factors and to a certain extent, depends on the type of disease of the cared person. Although the type of disease or the level of dependence may influence the caregiver's burden, it is obvious that the caregiver suffers a series of physical, mental and/or socio-economic disruptions in his/her life. Given the problem's magnitude, it is relevant that health professionals detect and pay attention to this group, through different interventions able to prevent and relieve the negative effects that the task of being caregiver involves. Effectiveness of the different interventions The interventions by health professionals aimed at supporting informal caregivers vary, the most common being educational programmes (face to face, on-line, software or published guidelines), other less frequent are monitoring phone calls, self-help groups seminars, and support groups. The effectiveness of these interventions is variable, between low and moderate (8-11), some authors only identify short-term benefits (10,12) where there may be a reduction in the caregivers' stress level after the intervention, but this reduction is not maintained for a long period of time. In 2000 (13) a meta-analysis was published assessing the effectiveness of group and individual interventions for caregivers that included 18 studies on group interventions, and 8 on individual interventions. The analysis indicated that for group interventions positive effects of the treatment were found in relation to caregivers' burden (size of the effect 0,41, 95% CI: 0,32-0,51), and for individual interventions the size of the effect was 0,48, (95% CI: 0,15-0,37). Sorensen, Pinquart and Duberstein reviewed 78 intervention studies (14) with six different interventions and assessed the effectiveness in relation to 6 outcome variables. They demonstrated that combined interventions resulted in a significant improvement for the caregiver's burden, as well as for his/her depression, subjective welfare, perceived satisfaction and care receptor's symptoms. Psychoeducational and psychotherapeutic interventions showed the most solid short-term effects in all outcome measurement. The impact on caregivers of elderly with dementia was not modified by group interventions (15). A review (16) of more than 30 published articles, conducted in 2003, on the effectiveness of interventions on caregivers of patients with dementia reports, among other results, that the said interventions are more successful when they include patients and families. All the reviewed studies report that the heterogeneity of the interventions included in the studies makes it impossible to establish which of them would be most effective in practice. This highlights that no studies exist having assessed independently the effectiveness of those interventions with regard to the proposed diseases and having done an effectiveness analysis as the one proposed in this project. There are a wide range of interventions and a lack of consensus concerning which one is the best. Therefore, a comprehensive and updated systematic review is necessary, which not only will help to identify the optimal practice but also will highlight the limits of the proposed interventions. Objectives: Primary objective: Assess the effectiveness of the interventions on principal caregivers of patients with cancer and/or the most frequent types of dementia, through a systematic review. Specific objectives: Identify the level of evidence of the interventions undertaken on caregivers. Assess if the identified interventions improve the caregiver's quality of life. Assess if those interventions reduce the caregiver's stress and depression. Know if the interventions reduce the caregiver's burden. Identify the principal caregivers' satisfaction. Know the level of dependence of the cared persons in the cases where the used tool has been measured. Assess if the interventions reduce the institutionalisation of the cared persons. Know the assessment tools used for evaluating the caregiver: quality of life, stress, burden and satisfaction. Criteria for considering studies for this review The review will focus on all the relevant studies relating to the interventions on informal caregivers. Type of studies: This review will consider any review, randomised controlled trial, experimental or quasi-experimental design studies that explore the effectiveness of interventions on informal caregivers. Types of participants: The review will include all studies where the subjects of study are principal caregivers of patients with cancer and/or the most frequent types of dementia, specifically: Alzheimer's disease, vascular dementia, Pick's disease and Lewy body disease. For the purpose of this review, a principal or informal caregiver is defined as the person in charge of helping or taking care of the ill person who is not able to manage on their own. They do not receive economic remuneration and in general do not have any specific training for care. These carers are home-bound. Types of interventions: The review will include any help and support (physical or mental) interventions, undertaken on principal caregivers, either if they are done by phone, support groups, workshops, counselling, self-care interventions, educational programmes, e-medicine, psychotherapy, social support or self-help. All the interventions will be realized by health professionals. Types of outcome measures: - The main outcome measures, in relation to the caregivers, will be: Stress, depression, mental health, physical health, burden, abandonment, caregiver's quality of life and satisfaction. - Secondary outcome measures in relation to the cared person: Physical health, cognition, medication use, mobility, level of dependence, satisfaction and institutionalisation or hospitalisation. - Other variables: Age; gender; fulfilment of the intervention; caregiver's economic impact; caregiver's social impact; family support; professional situation; material resources. The tools used for measuring the cared person's level of dependence will also be recorded. Concerning the caregiver, the tools used for measuring quality of life, stress, overload and satisfaction will be recorded. Search strategy: Electronic search strategies will be used for identifying the relevant studies. Searches will be conducted in the following databases: MEDLINE; COCHRANE, CINAHL, PSYCINFO, EMBASE, SUMSEARCH, TRIPDATABASE, IME, CUIDEN, PSYCLIT, PBSC and DARE. The studies included will be those published in English, French and Spanish, from any geographic area, published from any year (from the beginning of the mentioned databases) until the date of the search. Additional searches, as secondary and manual searches, will be conducted, including publications on the subject from the bibliographic searches of the studies included. Furthermore, congress papers, researchers' or expert organisations' communications will be included. The search for unpublished studies will include the following sources: Dissertation abstracts international Proceedings database Communication with key organizations and key researchers in the area Key words that will be used in the search: The preliminary key words for initial search are as follows: Type of the study: The search elaborated by the Cochrane Collaboration will be used, which considers the following terms: randomi?ed-controlled-trial*, controlled-clinical-trial, control* trial, random-allocation, doubl*-blind-method, singl*-blind-method, tripl*-blind-method, clinical-trial, placebo*, research-design, experimental, quasi-experimental. Subjects of the studies: Dementia Alzheimer Type, Dementia Vascular, Lewy Bodies, Dementia Lewy Body, Classical Niemann-Pick Disease, Pick Disease Of The Brain, Pickwickian Syndrome, Dementia Multi-Infarct, Arteriosclerosis, Cerebrovascular Disorders, Delirium Dementia, Amnestic Cognitive Disorders, Delirium, Mental Illness, Disabiliti*, Dependency. Cancer*, Neoplasm*, Tumor*. Caregivers: Caregiver*, Care Giver*, Carer*, Spouse*, Family Caregiver*, Primary caregiver* Outcome measures: Stress*, Depress*, Burden, Behavioural and psychological symptoms, Cognitive impairment, Care setting*, Mental health, Satisfaction, Quality of life, Coping, Well-being. Intervention: Intervention*, Telephone, Support group*, Counselling, Self-care, Education, Telemedicine, Psychotherapy, The strategy for Spanish databases will be the same as in English. Depending on the obtained outcomes after the utilisation of these key words the search will be limited or widened and other key words found in the first search will be used. Methods of review Selection of the studies: Two observers will independently and blindly assess the titles and abstracts of the references identified in order to assess their potential eligibility. The studies will be included if they fulfil all the aforementioned criteria concerning: 1) Type of participants; 2) Type of study's design; 3) Specified interventions; 4) Outcomes, if they measure, at least, one of the specified outcome variables. If the title or abstract does not provide enough information the whole study will be considered. Studies will be withdrawn if both reviewers agree that the article does not fulfil the established criteria, and in case of disagreement, a third reviewer will assess the study. In the case of duplicated publications their consistency will be verified and the publication with the longer follow-up period will be included. Critical appraisal: Methodological quality will be assessed by two reviewers using a checklist developed by the Joanna Briggs of quality will with experimental randomised and Two reviewers will independently assess all the between reviewers will be by with a third A will be for assessing the of the and for assessing the and thus the of the researchers in the and the quality of the of the to the both reviewers a consensus in every of the will be independently by two reviewers using a tool developed by will be with by a third necessary, the principal will be to A of the will also be for the of the and it if As in the the will be and will be undertaken independently by two between reviewers will be by with a third necessary, the principal will be to of each and/or significant changes in outcomes will be and showed groups in every study. will be in the software developed by the for this If with the available data, the study outcomes will be in a meta-analysis using Review software from the Cochrane The effect measures will be relative risk and to or continuous The of 95% will be for every between studies will be using For the purpose of this review, will to with and/or the If the outcomes is not or these will be in a