Eurocarers - Newsletter MARCH 2009

Eurocarers' Newsletter March 2009

1. News from Eurocarers by the EXECUTIVE COMMITTEE

General Assembly in Athens

The Executive Committee has worked on the agenda for the General Assembly in Athens, on May 16th. There will be a discussion on the future course of Eurocarers and its priorities. Also, elections will take place. Further, there will be a presentation at the General Assembly on carers' issues in Greece by our Greek hosts Areti Efthymiou, Costis Prouskas and Judy Triantafillou.

Hillary Arksey will present findings from the study Care Provision within Families and its Socio-Economic Impact on Care Providers. This study was carried out by the Eurocarers researchers members of the Social Policy Research Unit of the University of York and Vilans, Centre of Expertise for Long-term Care in the Netherlands. The attendees will be invited to share their views and experiences; so it will be an interactive event. Finally, MOVISIE will report on their project 'Lighten the burden'.

Funding

Further, the Executive Committee is working on funding, a subject of constant concern. New options are explored and there is some prospect of funding that will enable Eurocarers to carry out more activities than in the past year and to contract more supportive staff and consultants. Nevertheless, this funding is not yet ensured; so Eurocarers is still in an uncertain position as far as money is concerned.

Workforce for Health

The Executive Committee has also prepared a letter to the EU presidency: in particular the French president Mr. Nicolas Sarkozy with copies to the Czech and Swedish Presidencies. In this letter Eurocarers brings forward its disappointment that carers are only mentioned once in the Green Paper on Workforce for Health, that was adopted December 10, 2008 (see: http://ec.europa.eu/health/ph_systems/workforce_en.htm). It is underlined how important the role of the 100 million informal carers in Europe is and that we expect that in future papers the role of informal carers will be addressed. Further, Eurocarers (in particular Christine Marking) is preparing a meeting of the Special Interest Group of the European Parliament on the European Commission Green Paper on Workforce for Health on the 15^th of April.

Elections for Executive Committee

The Executive Committee will undergo some changes. As earlier announced, Henk Nies will step down as vice-chair on behalf of the researchers members and Marja Pijl as honorary secretary. Candidates can nominate themselves before the first of May. For the researchers it is already known that Giovanni Lamura is willing to stand for the position of vice-president; for Marja's position nominations are welcome, as well as for the positions of Vice President Carers Organisations, Treasurer and ordinary member, because all the members who serve in these positions have completed their first term of office and need to be re-elected for a second term, if they are willing to continue. In the meantime, the new member of the Executive Committee Liam O'Sullivan has quickly acquainted himself with the work of the Executive. His contribution is very valuable and very much welcomed.

Special Interest Group on Carers discusses Renewed Social Agenda and anti-discimination

The Special Interest Group on Carers of the European Parliament held a meeting on the so-called Renewed Social Agenda and a possible new direction on protection from discrimination on grounds of age, disability, sexual orientation and religion or belief. It refers to discrimination beyond the workplace. Mr. Alvaro Oliviera of DG Employment, Social Affairs and Equal Opportunities addressed the issue of reconciliation of work and family life. He explained the measures to support women in particular in reconciling work and family life. He also provided some examples of how EU anti-discrimination legislation applies to carers. There are slight openings in EU legislation, that may apply to people who provide care for al longer period of time to relatives.

Henk Nies, vice-president of Eurocarers, elaborated on the for main areas of the Social Package and the consequences for carers: health inequalities, employment, income and social security and young caresr. He illustrated his plea with figures from various EU members states. He argued that professional/voluntary support and social services in Member States should be improved and encouraged, so that work and care can be combined and young carers relieved. Specific income measures should be taken to guarantee carers' pensions and incomes. Employment should be more flexible. In addition, carers' breaks, carers' relief, and measures to re-enter job and/or labour market should be developed. Investments should target technology to support carers. And lastly, the problems and symptoms of young carers in primary and secondary education (early detection, training) should be recognised and addressed.

In the debate that followed the presentations MEP Kathy Sinnot and Marian Harkin agued that caring should naturally takes place in the family or the immediate social network. EU policy should facilitate that people can stay as long as possible in their natural 'habitat'. It was also stated that most informal care issues are a responsibility of members states, there are aspects on which EU action should be taken. A large delegation of Irish carers participated vividly in the discussion. MEP Marian Hark concluded that the value of caring could be viewed in financial terms as well as in personal terms. However, whichever way one looks at it, it is clear that the value is not sufficiently recognized. The EU should not interfere but provide support. The first step is to facilitate the sharing of knowledge and good practice.

Factsheet Eurocarers

Available for Eurocarers' members: The factsheet "Informal care in Europe, The contribution of carers to long-term care, especially for older people" in pdf (www.eurocarers.org) and in print (please send an email to g.visser@vilans.nl if you need some copies),

2 Inspiring examples

Handbook for Long Distance Caregivers: An Essential Guide for Families and Friends Caring for Ill or Elderly Loved Ones.

Offers a roadmap for those new to the challenges of caring from afar for ill or elderly loved ones. Includes information about how to assess your care situation, develop a care team, hold a family meeting, access community organizations and private agencies, and balance work and caregiving. Family Caregiver Alliance O, P http://www.caregiver.org

Family Care Navigator.

A comprehensive online guide to help families in all 50 states and the District of Columbia locate government, nonprofit, and private caregiver support programs and resources for older or disabled adults in their communities. It includes eligibility criteria and contact information for each program. Family Caregiver Alliance DB, O http://www.caregiver.org

TeleCaregiving Workshop Audio Archive

Teleconferences on a variety of topics focused on helping caregivers, such as Caring Together!, Practical Tips for Sharing Caregiving Responsiblities with Your Siblings and Other Family Members, and Keeping Away the Caregiver Blues.

Family Caregiver Alliance A http://www.caregiver.org

After The Hospital: What's Next?

Planning post-discharge care for elderly persons who have been hospitalized. Terra Nova Films V http://www.terranova.org

eHope.

Suggestions on how to organize friends, family, and others to help with end-of-life care. Offers ideas in setting up personal networks and provides online communication tools. http://ehope.nu

3. New literature on Informal care

Articles from Eurocarers' researchers

Family Carers' Experiences Using Support Services in Europe: Empirical Evidence From the EUROFAMCARE Study / Giovanni Lamura, Eva Mnich, Mike Nolan, Beata Wojszel, Barbro Krevers, Liz Mestheneos, Hanneli Döhner, and on behalf of the EUROFAMCARE Group. In: The Gerontologist 48:752-771 (2008)

Purpose: This article explores the experiences of family carers of older people in using support services in six European countries: Germany, Greece, Italy, Poland, Sweden, and the UK. Design and Methods:Following a common protocol, data were collected from national samples of approximately 1,000 family carers per country and clustered into comparable subgroups to facilitate cross-national analysis.Results: Carers' use of available support services is limited across Europe but is considerably higher in Germany, Sweden, and the UK than in Poland, Greece, and Italy. Service use is more prevalent among wives and carers with stronger support networks and less frequent among working daughters with high levels of burden, suggesting the need for a reconsideration of eligibility criteria and better targeting of service responses. Access to and use of services is characterized by a divide between carers in northwestern Europe, who experience few difficulties other than the older person's refusal to accept the support offered, and carers in southeastern Europe, where service affordability and poor transportation present remarkable barriers. Concerns regarding the timeliness and quality of support are common to all countries. Implications: European Union-wide efforts to improve carer support need to focus on improving the care system's ability to provide timely, high-quality care delivered by staff who treat the older person with dignity and respect, and to enhance cooperation between health professionals (in all countries), informal networks (especially in southeastern Europe), social services (particularly in Sweden and the UK), and voluntary organizations (in Germany and the UK).

Swedish experiences of a negotiated approach to carer assessment: the Carers Outcome Agreement Tool / Elizabeth Hanson, Lennart Magnusson, Janet Nolan. - In: Journal of Research in Nursing ; vol. 3 (2008) nr. 5, p. 391-407

Given that the majority of frail older people living at home are cared for by family members, ensuring appropriate and sensitive support services for family carers is a major policy priority globally. Such assessment of the needs and situation of individual carers is a crucial first step towards ensuring that they receive flexible, quality support services. However, existing assessment practice is still inadequate in many countries. This paper describes a negotiated approach to carer assessment, the Carers Outcome Agreement Tool (COAT) and briefly considers its development with carers and practitioners in an Anglo-Swedish development project (2003-2005) and subsequent implementation within five municipalities in Sweden (2006-2008). A participatory research design was adopted in both projects building on the ÄldreVäst Sjuhärad model, which is a user-focused approach to research and development. This paper provides a short summary of the COAT development before presenting the qualitative findings from the Swedish implementation project (2006-2008), which emerged from focus group interviews with COAT practitioners and telephone follow-up interviews with carers who had a first and second COAT assessment. The findings clearly highlight the value of COAT in enabling partnerships to be developed between carers and practitioners, which recognise the expertise of both parties. They also challenge providers to invest sufficient time and 'ear-marked' resources for family care support so that COAT becomes an integral part of a comprehensive long-term carer strategy, which feeds directly into local developments in service delivery and organisation.

Supporting working carers : do policies in England and The Netherlands reflect 'doulia rights'? / Hilary Arksey, Marjolein Morée. - In: Health and Social Care in the Community ; jrg. 16 (2008) nr. 6 (June), p. 649 - 657

Governments of advanced European welfare states with ageing populations are struggling to reconcile what seem to be conflicting policies. On the one hand, they are trying to increase the labour market participation of women and older workers. On the other hand, they are making more demands on people to care for disabled, chronically ill and frail older relatives and friends. Those caregivers are more likely to be women and older people. In this paper, we present the policies and experiences of carers from two countries that differ in type of welfare state, health and social care system and labour market context: England and The Netherlands. The aim was to compare English and Dutch policy measures for carers and examine their impact with evidence from two studies of people who combine work and care. The analysis is informed by the theoretical concepts of 'doulia' (whereby the state, employers and other sections of society reciprocate carers and other dependency workers for their unpaid caregiving) and 'doulia rights' (a carer's right to provide care without the risk of impoverishment). The evidence suggests that English and Dutch carers' policies have different strengths and weaknesses, but in neither country do they show strong commitment to the right to doulia.

Socio-demographic determinants of informal caregiving: co-resident versus extra-resident care / Benedicte de Koker. In: European Journal of Ageing (submitted).

This article adds to the literature on the 'supply side' of informal care, by examining the socio-demographic determinants of co-resident and extra-resident informal caregiving. Results from the population survey ''Care in Flanders'' (N = 2826), provide evidence for a different relationship between socio-demographic characteristics and informal caregiving, according to the location of care. Women, persons living without children and married (vs. unmarried) persons are more likely to be involved in extra-resident care. Involvement in co-resident care on the other hand, is more common among persons in less good health and sharing a household with someone other than a spouse or child, mostly a parent. The relationship between socio-demographic factors and care intensity is not uniform as well: while younger age and having no paid work are related to more intensive caregiving within the household, this is not the case among extra-resident caregivers. Results may be explained by the fact of some groups having more/less access to ''legitimate excuses'' for providing less extra-resident care, unequal risks of being confronted with (higher) care needs, as well as selection effects. Overall, our results were weak, pointing to the weakness of a strictly supply based approach in order to predict evolutions in informal care. Future studies should be aware of the differences between co-resident and extra-resident caregiving, taking into account factors from a supply as well as a demand perspective.

Dementia and Informal care

A three-country randomized controlled trial of a psychosocial intervention for caregivers combined with pharmacological treatment for patients with Alzheimer disease : effects on caregiver depression / Mary Sherman Mittelman, Henry Brodaty, Aaron Seth Wallen, ... [et al.]. - In: American Journal of Geriatric Psychiatry ; vol. 16 (2008) nr. 11, p. 893-904

Evaluates the effectiveness of a combination of cholinesterase inhibitor therapy for patients with Alzheimer disease (AD) and psychosocial intervention, for their spouse caregivers compared with drug treatment alone in three countries simultaneously.

An educational intervention to support caregivers of elders with dementia / Michelle Devor. - In: American Journal of Alzheimer's Disease and Other Dementias ; vol. 23 (2008) nr. 3, p. 233-241

The majority of home-dwelling elders with dementia are cared for by family members or friends. Interventions to support community-based caregivers are needed. A community-based seminar series was provided to 300 self-referred family caregivers with dementia. Participants were surveyed for caregiver burden and overload and perceived competence before and 6 months after the seminars.

Carers perspectives on the activity patterns of people with dementia / Pat Y.F. Chung, Caroline Ellis-Hill, Peter G. Coleman, 2008 ; In: Dementia ; vol. 7 nr. 3, p. 359-381

Participation in activity is essential for the psychological well-being of people with dementia. The potential benefits of home-based activity programmes may depend on family carers, but little is known about their experience. This study aimed to elicit carers' experiences of involving the person with dementia in activity.

Community-based service use by elders with dementia and their caregivers : a latent class analysis / Anna S. Beeber, Joshua M. Thorpe, Elizabeth C. Clipp. - In: Nursing Research ; vol. 57 (2008) nr. 5 , p. 312-321

Objective of this study was to classify care recipients with dementia and their caregivers who shared similar patterns of community-based support service use and to identify predictors of class membership.

Contented dementia : 24-hour wraparound care for lifelong well-being / Oliver James. - London : Vermilion, 2008.

Outlines a new, practical method for managing dementia that will allow both the person with dementia and their carer to maintain a high quality of life throughout every stage of their illness.

Coping strategies, anxiety and depression in caregivers of people with Alzheimer's disease / Claudia Cooper, Cornelius Katona, Orrell. Martin, ... [et al.]. - In: International Journal of Geriatric Psychiatry ; vol. 23 (2008) nr. 9, p. 929 - 936

Few longitudinal studies have investigated the impact of coping on psychological morbidity in caregivers of people with dementia. Findings are inconsistent and little attention is paid to anxiety in caregivers. This study explored the hypothesis that the relationship between caregiver burden and anxiety and depression is mediated by coping style.

Coping with caring for someone with dementia : reviewing the literature about men / Kevin L. Baker, Noelle Robertson. - In: Aging & Mental Health ; vol. 12 (2008) nr. 4 (juli), p. 413-422

As the demographics of the population change, men are assuming increasingly important roles as caregivers, despite caregiving often being perceived as a feminine activity. Research to date has described sex differences in caregiving and psychological outcomes. However, there appears to be little understanding of varying ways men may cope with the strains of caregiving. To this end, a systematic literature search was carried out to determine what is known about men coping with caring for someone with dementia.

Correlates of intrusion and avoidance as stress response symptoms in family carers of patients suffering from dementia / Ingun Ulstein, Torgeir Bruun Wyller, Knut Engedal. - In: International Journal of Geriatric Psychiatry ; vol. 23 (2008) nr. 10 (8 mei), p. 1051-1057

This study aims to explore intrusion and avoidance in family carers of dementia patients. Spouses and other family carers having daily contact with patients with dementia experience moderate to high levels of intrusion and avoidance. These symptoms are associated with symptoms of anxiety, distress and depression and should be taken into account when tailoring interventions for carers

Dementia patient suffering and caregiver depression / Richard Schulz, Kathleen A. McGinnis, Song Zhang, ... [et al.]. - In: Alzheimer Disease & Associated Disorders ; vol. 22 (2008) nr. 2 (apr./juni), p. 170-176

Cross-sectional and longitudinal analyses were carried out to assess the relationship between dementia patient suffering, caregiver depression, and antidepressant medication use in 1222 dementia patients and their caregivers.

Dying with dementia : the views of family caregivers about quality of life / C. Russell, H. Middleton, C. Shanley. - In: Australasian Journal on Ageing ; vol. 27 (2008) nr. 2, p. 89-92

Objective of this study was to document the views of family caregivers of persons with dementia about quality of life for their relative during the late and terminal stages of the disease, as part of an exploratory study of best quality care and support.

Early counselling and support for patients with mild Alzheimer's disease and their caregivers : a qualitative study on outcome / V. S Lisbeth, ... [et al.]. - In: Aging & Mental Health ; vol. 12 (2008) nr. 4 (juli), p. 444-450

The aim of this qualitative study was to identify and analyse the participants' experienced outcome of an intensive structured psychosocial intervention programme with tailored counselling, education and support groups for home-living patients with mild Alzheimer's disease and their spousal caregivers.

Family caregiver satisfaction with the nursing home after placement of a relative with dementia / Jane B. Tornatore, Leslie A. Grant. - In: The Journals of Gerontology Series B ; vol. 59 (2004) nr. 2 (mrt.), p. 80-88

This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies.

Grounding constructions of carers : exploring the experiences of carers through a grounded approach / Michael Burton. - In: British Journal of Social Work ; vol. 38 (2008) nr. 3, p. 493-506

Social and political constructions of carers have been criticized for undervaluing the complexities of the experiences of carers. However, relatively little research has attempted to generate more meaningful constructions of carers by drawing these considerations together. The purpose of this article is to begin addressing this need.

Group living homes for older people with dementia : the effects on psychological distress of informal caregivers / Selma te Boekhorst, Anne Margriet Pot, Marja Depla, ... [et al.]. - In: Aging & Mental Health, ; vol. 12 (2008) nr. 6 (nov.), p. 761-768

The aim of this study was to investigate the effects of group living care for people with dementia on the psychological distress of informal caregivers, compared with regular nursing home care.

Informal caregivers of residents in group living homes do not have less psychological distress than informal caregivers of residents in regular nursing homes. Although there was a trend towards less psychopathology in informal caregivers of group living homes, the amount of symptoms remained very high in both caregiver groups. This means that the psychological well-being of caregivers deserves the continuing attention of health care providers, also after admittance of their relative in a nursing home facility.

Help-seeking patterns of older spousal caregivers of older adults with dementia / Janet Brown, Shu-li Chen. - In: Issues in Mental Health Nursing ; vol. 29 (2008) nr. 8 (aug.), p. 839-852

This qualitative, descriptive, secondary analysis of spousal caregivers (n = 20) examined similarities and differences in help-seeking patterns to understand the processes underlying decisions regarding resource use.

Patient and caregiver perspectives of quality of life in dementia : an investigation of the relationship to behavioural and psychological symptoms in dementia / Catherine Hurt, Sarmishtha Bhattacharyya, Alistair Burns, ... [et al.]. - In: Dementia and Geriatric Cognitive Disorders ; vol. 26 (2008) nr. 2 (sept.), p. 138-146

Behavioural and psychological symptoms have a high prevalence amongst patients with dementia and can be a significant source of distress to both patients and carers. The present study explored the relationships between quality of life and behavioural and psychological symptoms in dementia (BPSD) from both patient and carer perspectives.

Perceived stress and resilience in Alzheimer's disease caregivers : testing moderation and mediation models of social support / Scott E. Wilks, Beth Croom. - In: Aging & Mental Health ; vol. 12 (2008) nr. 3 (mei), p. 357-365

This study examined whether social support functioned as a protective, resilience factor among Alzheimer's disease (AD) caregivers. Moderation and mediation models were used to test social support amid stress and resilience. Stress negatively influenced and accounted for most variation in resilience. Social support positively influenced resilience, and caregivers with high family support had the highest probability of elevated resilience. Moderation was observed among all support factors. No social support fulfilled the complete mediation criteria. Evidence of social support as a protective, moderating factor yields implications for health care practitioners who deliver services to assist AD caregivers, particularly the promotion of identification and utilization of supportive familial and peer relations.

Personal losses and relationship quality in dementia caregiving / Kathryn Betts Adams, McKee J. McClendon, Kathleen A. Smyth, 2008 ; Text. - In: Dementia ; vol. 7 nr. 3, p. 301-319

Models of the dementia caregiving stress process specify that the impairments and behavioral problems of the person with Alzheimer's disease or related disorder (ADRD) and primary subjective stressors, such as burden, along with secondary stressors and appraisals, lead to negative outcomes such as depression. This cross-sectional study focused on the affective and relational aspects of this process, examining the associations of personal and relational losses and perceived relationship quality to ADRD caregivers' depressive symptoms, using a series of multiple regressions to specify a path model. Loss of intimate exchange, current quality of relationship, and loss of self each had direct effects or indirect effects on caregiver depression that suggest the important role of personal and relational losses in the stress process.

Predictors of Alzheimer's disease caregiver depression and burden : what noncaregiving adults can learn from active caregivers / Bert Hayslip, GiBaeg Han, Cristina L. Anderson. - In: Educational Gerontology ; vol. 34 (2008) nr. 11 (nov.), p. 945-969

This study examined similarities and differences between active caregivers (adult children and spouses whose family member had Alzheimer's disease) and not-as-yet caregiving adults (adult children and spouses whose family members are older, but do not as yet suffer from Alzheimer's disease). The objective was to determine what factors predict depressed mood and caregiver burden. The findings suggest that not-as-yet-caregiving adults could better prepare for potential caregiving distress by learning active self-care skills, identifying what is meaningful about both growing older and about caregiving, and building a social network of support, all in anticipation of active caregiving

Prevalence of stress, anxiety and depression in with Alzheimer caregivers / Maria Ferrara, Elisa Langiano, Tommasina Di Brango, ... [et al.], 2008. - In: Health and Quality of Life Outcomes ; vol. 6 nr. 93 (6 nov.)

Alzheimer's disease presents a social and public health problem affecting millions of Italians. Those affected receive home care from caregivers, subjected to risk of stress. The present investigation focuses on stress, anxiety and depression in caregivers.

Sleep pattern differences between older adult dementia caregivers and older adult noncaregivers using objective and subjective measures / Meredeth A. Rowe, Christina S. McCrea, Judy M. Campbell, ... [et al.]. - In: Journal of clinical sleep medicine ; vol. 4 (2008) nr. 4 (15 aug.), p. 362-369

Informal caregivers of persons with dementia often complain about poor quality sleep; however, studies on caregivers have mixed results when examining sleep values. The purpose of this study was to describe the sleep patterns in a subset of dementia caregivers who provide care during the night, and compare those patterns to noncaregiving adults.

Support to family carers of patients with frontotemporal dementia / Tor Alte Rosness, Per Kristian Haugen, Knut Engedal. - In: Aging & Mental Health ; vol. 12 (2008) nr. 4 (juli), p. 462-466

Examines the provision of support to patients with frontotemporal dementia (FTD) and their family carers compared with patients with early onset Alzheimer's dementia (AD) and their carers, and the carers' satisfaction with the support.

The four-factor model of depressive symptoms in dementia caregivers : a structural equation model of ethnic differences / David L. Roth, Michelle L. Ackerman, Ozioma C. Okonkwo, ... [et al.]. - In: Psychology and Aging ; vol. 23 (2008) nr. 3 (sept.), p. 567-576

Previous studies have suggested that 4 latent constructs (depressed affect, well-being, interpersonal problems, somatic symptoms) underlie the item responses on the Center for Epidemiological Studies Depression (CES-D) Scale. This instrument has been widely used in dementia caregiving research, but the fit of this multifactor model and the explanatory contributions of multifactor models have not been sufficiently examined for caregiving samples. The authors subjected CES-D data (N = 1,183) from the initial Resources for Enhancing Alzheimer's Caregiver Health Study to confirmatory factor analysis methods and found that the 4-factor model provided excellent fit to the observed data. Invariance analyses suggested only minimal item-loading differences across race subgroups and supported the validity of race comparisons on the latent factors. Significant race differences were found on 3 of the 4 latent factors both before and after controlling for demographic covariates. African Americans reported less depressed affect and better well-being than White caregivers, who reported better well-being and fewer interpersonal problems than Hispanic caregivers. These findings clarify and extend previous studies of race differences in depression among diverse samples of dementia caregivers.

What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers / Barbara J. Harmer, Martin Orrell. - In: Aging & Mental Health ; vol. 12 (2008) nr. 5 (sept.), p. 548-558

Background: Older people with dementia living in care homes often lack appropriate activities. Although homes are expected to offer a range of activities to meet residents' needs, little is known about what makes activities meaningful for people with dementia. This study explores concepts of meaningful activity, as defined by older people with dementia living in care homes, staff and family carers.

Method: This qualitative study used focus groups including 17 residents, 15 staff and eight family carers from three care homes. Transcripts of the groups were subjected to thematic content analysis using a grounded theory approach.

Results: Four activity themes emerged-'reminiscence', 'family and social', 'musical' and 'individual'. There were also two related themes-'lack of meaningful activity' and 'what makes activity meaningful'. Residents found meaning in activities that addressed their psychological and social needs, which related to the quality of the experience of an activity rather than specific types of activities. In contrast, staff and family carers viewed activities that maintained physical abilities as meaningful.

Conclusion: People with dementia staff and carers had differing views about what made activities meaningful. Organisational limitations and social beliefs limited the provision of meaningful activities for this population. The study also indicates areas for improving activity provision in care homes.

Working with families of hospitalized older adults with dementia : caregivers are useful resources and should be part of the care team.. / Christine Bradway, Karen B. Hirschman. - In: AJN, American Journal of Nursing ; vol. 108 (2008) nr. 10 (okt.), p. 52-60

Families provide a considerable amount of informal care and support for older adults living with dementia. And when an older adult with dementia is hospitalized, family caregivers should be seen as important sources of information and included as valuable members of the health care team. This article describes a best-practice approach to working with families and includes recommendations for using the Information for the Hospital Team About a Patient with Memory Problems form. For a free online video demonstrating the use of this form, go to http://links.lww.com/A301. Download the article from: http://www.nursingcenter.com/library/JournalArticle.asp?Article_ID=818878

A valid instrument for measuring informal care time for people with dementia / Simone Neubauer, Rolf Holle, Petra Menn, ... [et al.]. - In: International Journal of Geriatric Psychiatry ; jrg. 24 (2008) nr. 3, p. 275 - 282

OBJECTIVE: An economic evaluation of dementia-related interventions from a societal perspective should take account of informal caregiving. We assessed informal caregiving time and report our findings on the validity and stability of our results. METHODS: Within the German IDA study ('Dementia Care Initiative in Primary Practice'), informal care time for people with dementia living at home is assessed. We applied a German adaptation of the Resource Utilization in Dementia (RUD) questions on informal care, which distinguishes three categories of informal care activities: Activities of Daily Living (ADL), Instrumental ADL (IADL), and supervision. In contrast to the original version, we included the time of all informal caregivers who are involved in caring for the patient. The questionnaire was completed as a computer-assisted telephone interview at baseline and after 1 year. To test the plausibility of the questionnaire, we proposed seven hypotheses about the reported informal care time. RESULTS: Nearly all results confirmed our hypotheses. Informal care time as well as changes over time correlated with the physical and mental health status of the patient. Considering the time of other informal caregivers led to slightly higher correlations (not significant). The results indicate that interviewees seem to underestimate particularly the time of supervision of other informal caregivers. CONCLUSION: In sum, the instrument gives plausible results and is suited for measuring informal care time, as well as changes over time. If it is not possible to directly interview each caregiver involved, it is of great importance to identify and interview the primary informal caregiver in order to prevent an underestimation of total informal care time.

Patient dependence and longitudinal changes in costs of care in Alzheimer's disease / Carolyn W. Zhu, Leibman Christopher, Trent McLaughlin, ... [et al.]. - In: Dementia and Geriatric Cognitive Disorders ; jrg. 26 (2008) nr. 5, p. 416-423

BACKGROUND/AIMS: To examine the incremental effect of patients' dependence on others, on cost of medical and nonmedical care, and on informal caregiving hours over time. METHODS: Data are obtained from 172 patients from the Predictors Study, a large, multicenter cohort of patients with probable Alzheimer disease (AD) followed annually for 4 years in 3 University-based AD centers in the USA. Enrollment required a modified Mini-Mental State Examination score >or=30. We examined the effects of patient dependence (measured by the Dependence Scale, DS) and function (measured by the Blessed Dementia Rating Scale, BDRS) on medical care cost, nonmedical care cost, and informal caregiving time using random effects regression models. RESULTS: A one-point increase in DS score was associated with a 5.7% increase in medical cost, a 10.5% increase in nonmedical cost, and a 4.1% increase in caregiving time. A one-point increase in BDRS score was associated with a 7.6% increase in medical cost, a 3.9% increase in nonmedical cost and an 8.7% increase in caregiving time. CONCLUSIONS: Both functional impairment and patient dependence were associated with higher costs of care and caregiving time. Measures of functional impairment and patient dependence provide unique and incremental information on the overall impact of AD on patients and their caregivers.

The COACH prompting system to assist older adults with dementia through handwashing : an efficacy study / Alex Mihailidis, Jennifer N. Boger, Tammy Craig, ... [et al.], 2008. - In: BMC Geriatrics ; jrg. 8 nr. 28 (7 Nov.)

BACKGROUND: Many older adults with dementia require constant assistance from a caregiver when completing activities of daily living (ADL). This study examines the efficacy of a computerized device intended to assist people with dementia through ADL, while reducing caregiver burden. The device, called COACH, uses artificial intelligence to autonomously guide an older adult with dementia through the ADL using audio and/or audio-video prompts. METHODS: Six older adults with moderate-to-severe dementia participated in this study. Handwashing was chosen as the target ADL. A single subject research design was used with two alternating baseline (COACH not used) and intervention (COACH used) phases. The data were analyzed to investigate the impact of COACH on the participants' independence and caregiver burden as well as COACH's overall performance for the activity of handwashing. RESULTS: Participants with moderate-level dementia were able to complete an average of 11% more handwashing steps independently and required 60% fewer interactions with a human caregiver when COACH was in use. Four of the participants achieved complete or very close to complete independence. Interestingly, participants' MMSE scores did not appear to robustly coincide with handwashing performance and/or responsiveness to COACH; other idiosyncrasies of each individual seem to play a stronger role. While the majority (78%) of COACH's actions were considered clinically correct, areas for improvement were identified. CONCLUSION: The COACH system shows promise as a tool to help support older adults with moderate-levels of dementia and their caregivers. These findings reinforce the need for flexibility and dynamic personalization in devices designed to assist older adults with dementia. After addressing identified improvements, the authors plan to run clinical trials with a sample of community-dwelling older adults and caregivers

Multiple Sclerosis and Informal Care

A descriptive profile of caregivers of older adults with MS and the assistance they provide / Marcia Finlayson, Chi Cho. - In: Disability & Rehabilitation ; vol. 30 (2008) nr. 24, p. 1848 - 1857

Purpose of this study was to describe and compare spousal and non-spousal caregivers of older adults with multiple sclerosis (MS), the nature and extent of assistance they provide, and the challenges they experience in the course of their caregiving role.

COPD and Informal Care

Active carers: living with chronic obstructive pulmonary disease / Allison Spence, Felicity Hasson, Mary Waldron, ... [et al.]. - In: International Journal of Palliative Nursing ; vol. 14 (2008) nr. 8 (aug.), p. 368-372

It has long been recognised that the majority of care provided in chronic illness comes not from health and social care professionals, but from family and friends. One such illness is chronic obstructive pulmonary disease (COPD), a leading cause of morbidity and mortality in the developed world. To explore the specific care needs of informal caregivers of patients with advanced COPD, interviews were conducted with seven active family caregivers.

Stroke and Informal Care

Psychosocial interventions for carers of survivors of stroke : a systematic review of interventions based on psychological principles and theoretical frameworks / Clare Eldred, Catherine Sykes. - In: British Journal of Health Psychology ; vol. 13 (2008) nr. 3 (sept.), p. 563-581

Most stroke survivors are cared for at home by informal carers, usually their partners or children. The chronic burden of meeting these care needs can have a significant impact on the psychological well-being of the carer. The aim of this review is to analyse interventions that target psychosocial functioning in carers of stroke survivors to understand how such interventions can reduce the burden of caring.

It is noted that there are relatively few studies investigating the impact of psychologically based interventions for carers of stroke survivors and the quality of evidence is varied. However, there is evidence of good quality to show that stroke patients benefit from a counselling combined with education intervention. The clinical implications of this review suggests, according to current available evidence, that those working with survivors of stroke and their families should consider providing counselling and education interventions to patients in the first instance. More research is needed to determine the effectiveness of interventions aimed at improving the psychosocial functioning of carers of survivors of stroke.

Cancer and Informal Care

Caregivers' differing needs across key experiences of the advanced cancer disease trajectory / Lori L. DuBenske, Kuang-Yi Wen, David H. Gustafson, ... [et al.]. - In: Palliative and Supportive Care ; vol. 6 (2008) nr. 3, p. 265-272

Familial caregivers are providing increasing amounts of care to advanced cancer patients. Increased understanding of caregivers' needs is vital in providing necessary support to lessen caregiver burden and morbidity. Current literature has identified caregiver and patient needs at broad stages of the cancer trajectory; however, such broad stages may be too general to inform a practice of targeting specific interventions when they have the greatest utility. This study examines a variety of particular needs across a number of more discrete illness-related transition experiences specifically in the advanced cancer disease trajectory.

Hope in advanced cancer patients / Susan E. McClement, Harvey Max Chochinov. - In: European Journal of Cancer ; vol. 44 (2008) nr. 8 (mei), p. 1169-1174

Individuals diagnosed with advanced cancer frequently experience physical and psychological distress. Hope has been identified as an essential resource in the lives of people with cancer, helping them to cope during times of suffering and uncertainty. This paper summarises evidence pertaining to hope in advanced cancer patients and their families or informal caregivers.

Patient/caregiver influences for declining participation in supportive oncology trials / M.K. Buss, L.L. DuBenske, S. Dinauer, ... [et al.]. - In: Journal of Supportive Oncology ; vol. 6 (2008) nr. 4 (apr.), p. 168-174

Enrolling adequate numbers of subjects to research projects that focus on the supportive needs of patients and caregivers is difficult, and this difficulty significantly impedes investigation of this important research area. This study reports reasons that patients or their informal caregivers declined to participate in one of two randomized, longitudinal clinical trials testing the Comprehensive Health Enhancement Support System (CHESS).

Depression and Informal Care

he nature of informal caregiving for medically ill older people with and without depression / Jane McCusker, Eric Latimer, Martin G. Cole, ... [et al.]. - In: International Journal of Geriatric Psychiatry ; jrg. 24 (2008) nr. 3, p. 239-246

OBJECTIVES: To describe patient and caregiver perceptions of the nature of informal caregiving in a sample of older medical inpatients with and without depression. METHODS: One hundred and fifty-four patient-caregiver pairs were recruited from a larger prospective observational study of three groups of medical inpatients aged 65 and over, with major, minor, and no depression, respectively, and with at most mild cognitive impairment. Interviews were conducted at the time of hospital admission to assess characteristics of patients (disability, comorbidity, perceptions of support) and caregivers (relationship, residence, types of assistance and time spent caregiving). Time spent on the physical tasks of caregiving (assistance with activities of daily living, physical care, transport) was estimated by all caregivers. Time spent on emotional or other support was estimated only for non-coresident caregivers RESULTS: In multivariable analyses, neither major nor minor depression was associated with time spent on physical support; major depression was associated with significantly increased time spent by non-coresident caregivers on emotional or other support; minor depression was associated with perceived inadequacy of support. CONCLUSIONS: Major depression is independently associated with greater time spent by non-coresident caregivers on emotional or other support; minor depression is associated with perceived inadequacy of support.

End-of-life care and Informal Care

Family meetings in palliative care : multidisciplinary clinical practice guidelines / Peter Hudson, Karen Quinn, Brendan O'Hanlon, ... [et al.], 2008. - In: BMC Palliative Care ; vol. 7 nr. 12 (19 aug.)

Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion.

An evaluation of Canada's Compassionate Care Benefit from a family caregiver's perspective at end of life / V.A., Crooks, A. Williams, 2008. - In: BMC Palliative Care ; vol. 7 nr. 14 (28 aug.)

The goal of Canada's Compassionate Care Benefit (CCB) is to enable family members and other loved ones who are employed to take a temporary secured leave to care for a terminally ill individual at end of life. The goal of this study is to evaluate the CCB from the perspective of family caregivers providing care to individuals at end of life.

Care for patients in the last months of life : the Belgian Sentinel Network Monitoring End-of-Life Care Study / Lieven Van den Block, Reginald Deschepper, Nathalie Bossuyt, ... [et al.]. - In: Archives of Internal Medicine ; vol. 168 (2008) nr. 16 (8 sept.), p. 1747-1754

Population-based studies monitoring end-of-life care are lacking. This study describes involvement of caregivers, access to specialist palliative care, treatment goals (cure, life-prolonging, or palliation), and content of end-of-life care (physical, psychosocial, or spiritual) in a representative sample of dying persons in Belgium.

Caregivers' active role in palliative home care - to encourage or to dissuade? A qualitative descriptive study / Anne Weibull, Frede Olesen, Mette Asbjoern Neergaard, 2008. - In: BMC Palliative Care ; vol. 7 nr. 15 (16 sept.)

The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease.

The encounter between informal and professional care at the end of life / Inger James, Birgitta Andershed, Britt-Marie Ternestedt. - In: Qualitative Health Research ; jrg. 19 (2009) nr. 2, p. 258-271

The purpose of this study was to obtain and describe in-depth knowledge about family carers' experiences of the encounter, in a hospital, between informal and professional care at the end of life. A hermeneutic approach was chosen, and we conducted interviews with 27 family carers 6 to 8 months after their loved one's death. In the encounter, the family carers made their own assessment of their loved one's condition and situation. The professionals' attitudes could both promote and impede the interaction between the two forms of care. Family carers' care actions were characterized by struggling to get treatment, being left behind, being partners, keeping the illness at a distance, hovering beside their loved one, waiting for death, and being experts and protectors. The main interpretation of the findings is that family carers possess practical knowledge about what care is the best, or least harmful, for their loved one. This can be linked to what Aristotle called phronesis.

Crying in solitude or with someone for support and consolation : experiences from family members in palliative home care / Kerstin Ryde, Peter Strang, Maria Friedrichsen. - In: Cancer Nursing ; vol. 31 (2008) nr. 5, p. 345-353

Crying has not been studied from the perspective of family members of patients in palliative care. The aim of this study was to explore the significance of family members crying in a palliative care context with special reference to factors that influence crying.

Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review / A. Docherty, A. Owens, M. Asadi-Lari, ... [et al.]. - In: Palliative Medicine ; vol. 22 (2008) nr. 2, p. 153-171

Objectives: To review current understanding of the knowledge and information needs of informal caregivers in palliative settings. Data sources: Seven electronic databases were searched for the period January 1994-November 2006: Medline, CINAHL, PsychINFO, Embase, Ovid, Zetoc and Pubmed using a meta-search engine (Metalib®). Key journals and reference lists of selected papers were hand searched. Review methods: Included studies were peer-reviewed journal articles presenting original research. Given a variety of approaches to palliative care research, a validated systematic review methodology for assessing disparate evidence was used in order to assign scores to different aspects of each study (introduction and aims, method and data, sampling, data analysis, ethics and bias, findings/results, transferability/generalizability, implications and usefulness). Analysis was assisted by abstraction of the key details of each study into a table. Results: Thirty-four studies were included from eight different countries. The evidence was strongest in relation to pain management, where inadequacies in caregiver knowledge and the importance of education were emphasized. The significance of effective communication and information sharing between patient, caregiver and service provider was also emphasized. The evidence for other caregiver knowledge and information needs, for example in relation to welfare and social support, was weaker. There was limited literature on non-cancer conditions and the care-giving information needs of black and minority ethnic populations. Overall, the evidence base was predominantly descriptive and dominated by small-scale studies, limiting generalizability. Conclusions: As palliative care shifts into patients' homes, a more rigorously researched evidence base devoted to understanding caregivers knowledge and information needs is required. Research design needs to move beyond the current focus on dyads to incorporate the complex, three-way interactions between patients, service providers and caregivers in end-of-life care settings.

Letting go before a death : a concept analysis / S.E. Lowey. - In: Journal of Advanced Nursing ; vol. 63 (2008) nr. 2 (juli), p. 208-215

The term 'letting go' has been used in an informal manner by nurses and other clinicians working with patients and families with terminal illnesses to depict a lack of acceptance of a loved one's impending death. This paper is a report of a concept analysis of letting go within the context of family caregivers and end-of-life care.

Palliative care in advanced dementia : a mixed methods approach for the development of a complex intervention / Elizabeth L. Sampson, Ingela Thuné-Boyle, Riitta Kukkastenvehmas, ... [et al.], 2008. - In: BMC Palliative Care ; vol. 7 nr. 8

There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will die within 6 months. These patients have complex needs but often lack capacity to express their wishes. Often carers are expected to make decisions. Advance care planning discussions are rarely performed, despite potential benefits such more consistent supportive healthcare, a reduction in emergency admissions to the acute hospital and better resolution of carer bereavement.

Bereaved carers

An inner struggle for hope : insights from the diaries of bereaved family caregivers / Lorraine Holtslander, Wendy Duggleby. - In: International Journal of Palliative Nursing, ; vol. 14 (2008) nr. 10 (24 okt.), p. 478 - 484

Aim: To explore the experience of hope for bereaved palliative caregivers through participant hope diaries. Design: A secondary analysis of hope diaries collected as part of a grounded theory study of hope and bereavement. Sample and setting: Twelve older women from a small Canadian city completed a hope diary. Data analysis: Content analysis (Patton, 2002) was applied to describe and interpret the data. Findings: Hope was a feeling of peace, courage, strength, and self-confidence that enabled them to face each day and look to the future with a positive outlook. Hindrances to hope were multiple losses, loneliness, and physical health concerns, which created an inner struggle for hope. Hope was fostered through positive thoughts, connections, and taking care. Writing in the diary affected their experience of hope. Conclusion: The diaries provide unique insight into their experience, suggesting practical ways to foster hope in bereavement.

Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment / A.A. Wright, B. Zhang, A. Ray, ... [et al.]. - In: JAMA ; vol. 300 (2008) nr. 14 (8 okt.), p. 1665-1673

Without evidence that end-of-life discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern of inflicting psychological harm. Objective of this study was to determine whether end-of-life discussions with physicians are associated with fewer aggressive interventions.

Caring for bereaved family caregivers : analyzing the context of care / Lorraine F. Holtslander. - In: Clinical Journal of Oncology Nursing ; vol. 12 (2008) nr. 3, p. 501-506

Deaths from cancer will continue to rise with an increasing and aging population. Family caregivers of patients with cancer will face loss, grief, and bereavement as a result. As mandated by cancer and palliative care clinical practice guidelines, support for family caregivers continues through the processes of grief and bereavement to facilitate a positive transition through loss.

End-of-life care and the grieving process : family caregivers who have experienced the loss of a terminal-phase cancer patient / Isabelle Dumont, Serge Dumont, Suzanne Mongeau. - In: Qualitative Health Research ; vol. 18 (2008) nr. 8, p. 1049-1061

Family caregivers of a loved one with advanced cancer are at risk for developing bereavement complications following the loss of the person they cared for. However, little research has studied caregiving and bereavement experiences as an ongoing process. This study was conducted with the aim of identifying the main elements constitutive of the experience of providing care and assistance to a patient with terminal cancer that influence the grieving process.

Carers from ethnic minority background

Barriers to home care for terminally ill Turkish and Moroccan migrants, perceived by GPs and nurses : a survey / Fuusje M. de Graaff, Anneke L. Francke, 2009 ; jrg. 8 nr. 3 (26 Jan.)

Background: Previous qualitative research proved that relatives of elderly terminally ill Turkish and Moroccan immigrants experience several barriers to the use of Dutch professional home care. The aim of this study was to explore how general practitioners and home care nurses perceive the home care for terminally ill Turkish and Moroccan migrants and their families in the Netherlands.

Methods: Questionnaires were sent to home care organizations and GPs working in areas where most of these migrants are living. 93 nurses and 78 GPs provided information about their experiences and opinions regarding home care for this group of patients. The data were analyzed by descriptive statistics.

Results: GPs refer relatively few patients from these migrant groups to home care. They often find it difficult to assess the needs of these patients and their families. In 40% of the GPs' cases in which terminally ill Turkish and Moroccan migrants were not referred to home care, the GP regretted this afterwards: the patients had not received sufficient qualified care, and their informal carers had often become overburdened. In addition, home care nurses often express dissatisfaction with the home care given to terminally ill Turkish or Moroccan patients, because of communication problems, the patients' lack of

knowledge of the disease, or difficulties in making suitable appointments with the patient or with the family.

Conclusion: Nurses and GPs cite chiefly similar factors influencing access to and use of home care as family members did in a previous study. However, according to GPs and nurses, the main barrier to the use of home care concerns communication problems, while relatives cited the preference for family care as the main reason for abstaining from the use of home care.

Burden and Informal Care

Adult daughters and aging mothers : the role of guilt in the experience of caregiver burden / Judith G. Gonyea, Ruth Paris, Lisa de Saxe Zerden. - In: Aging & Mental Health ; vol. 12 (2008) nr. 5 (sept.), p. 559-567

Although guilt is often identified as being a common emotion experienced by family caregivers in the clinical literature and in small descriptive studies, it has only recently emerged as a construct in the empirical research focused on identifying predictors of caregiver distress. This study explores the extent to which guilt contributes to caregiver burden.

Caregiving dynamics

Conceptual challenges in the study of caregiver-care recipient relationships / Jennifer Hagerty Lingler, Paula R. Sherwood, Margaret H. Crighton, ... [et al.]. - In: Nursing Research ; vol. 57 (2008) nr. 5 (sept./okt.), p. 367-372

Background: In the literature on family caregiving, care receiving and caregiving are generally treated as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping.

Objectives: To illustrate ways care dynamics may depart from traditional notions of dyadic unidirectional family caregiving and to stimulate a discussion of the implications of complex relational care dynamics for caregiving science.

Approach: Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) care dyads who are aging, are chronically ill, and who compensate for one another's deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another.

Conclusions: These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously.

Respite and Informal Care

Ethical and practical challenges raised by an adult day program's caregiver satisfaction survey / Anica Madeo, Sheila Feld, Beth Spencer. - In: American Journal of Alzheimers Disease and Other Dementias ; vol. 23 (2008) nr. 5, p. 423-429

A consumer satisfaction survey was completed by 21 caregivers to persons with dementia, who participated in Silver Club, a person-centered Adult Day Service program. Two themes emerged: caregivers expressed high program satisfaction based on joint benefits to members and caregivers, and they desired more information about the nature of the members' daily participation. These findings raised two important issues for program staff. First, Adult Day Service programs are often referred to and marketed as providing caregiver respite. This approach does not acknowledge caregivers' interest in programs that meet the needs of their loved ones, and may lead to reluctance to use programs that only stress the value of respite. Second, caregivers' desires for detailed feedback about members' program participation raise ethical and practical challenges within person-centered models of care. Collecting feedback from both participants and their caregivers can help monitor and improve services provided by person-centered Adult Day Service programs.

Informal carers of older family members: how they manage and what support they receive from respite care / S. Salin, M. Kaunonen, Astedt-Kurki P. - In: Journal of Clinical Nursing ; jrg. 18 (2009) nr. 4 (Feb.), p. 492-501

AIMS: To describe informal carers' coping strategies and their experiences of the support provided by respite care. BACKGROUND: The target set in the Finnish national old age policy strategy is that 90% of the population over 75 should be able to live at home. A major source of support for older people and their families is respite care in an institution. DESIGN: Survey. METHODS: The data were collected among informal carers who regularly use respite care services (n = 143). Two structured questionnaires were used: the Carers' Assessment of Managing Index (Nolan et al. 1995) and an index developed by the researchers. RESULTS: Informal carers who provided care for younger individuals or people who needed less help had a better quality of life. Spouse carers and older informal carers were less satisfied with their quality of life than younger carers. Periods of respite care had a major influence on informal carers' quality of life: 93% said they felt invigorated. Care periods remained rather isolated episodes in the lives of the older patients in that there was hardly any discussion at the institution about the family's situation, the objectives of respite care, or about how the informal carer was coping. Altogether, 47% of the nurses remained fairly distant. The most useful coping strategies involved creating alternative perspectives in the caring relationship. CONCLUSIONS: The results strengthen the knowledge base of informal caregiving by showing how caregivers cope and what kind of support they need in their demanding caring role. RELEVANCE TO CLINICAL PRACTICE: Respite care nurses should invest greater effort in supporting informal carers. The service should be developed as an integral part of home care for older people. Nurses and informal carers should see each other as partners who share a common goal, i.e. the well-being of the entire family.

Examining what caregivers do during respite time to make respite more effective / Dale A. Lund, Rebecca Utz, Michael S. Caserta, ... [et al.]. - In: Journal of Applied Gerontology ; jrg. 28 (2009) nr. 1, p. 109-131

Research on respite services for caregivers has been extensive over the past 25 years; however, findings regarding the effectiveness for improving their well-being have shown only moderate or mixed support. Missing from this research has been an examination of what caregivers do during their respite time. We studied 52 family caregivers who used adult day services and examined the consistency between their desired and actual respite activities and its relation to well-being outcomes. We concluded that (a) caregivers pursued a wide range of respite activities; (b) 46% were only somewhat or not very satisfied with how they spent their time; (c) those who were inconsistent in their desired versus actual respite activities and also dissatisfied with their use of time were more depressed, more negative in dimensions of burden, and less satisfied with caregiving; and (d) facilitators should be used to work individually with caregivers to identify activities and goals for respite time that are most likely to improve their well-being.

Understanding the use of respite services among informal carers / Nerina Vecchio. - In: Australian Health Review ; vol. 32 (2008) nr. 3 (aug.), p. 459-467

OBJECTIVE: To examine the use of respite services among carers of non-institutionalised individuals aged 15 and over with either profound or severe disabilities. METHODS: Based on data collected from the Australian Survey of Disability, Ageing and Carers in 2003, the investigation evaluated the statistical significance of a number of carer and recipient characteristics on the likelihood of the use of respite services. Further analysis assisted in identifying the support most desired by the majority of carers (88.6%, n = 243 690) who have never used respite. RESULTS: The results revealed that social and cultural factors played a critical role in the receipt of respite services. Family relationships were important. Just under one-fifth of all primary carers most preferred more financial assistance in their role as caregiver. After controlling for confounding variables it was found that, compared with other forms of assistance, the desire for an improvement in the primary carers' own health was more likely among non-respite users. This may reflect the carers' preference to improve their own capacity to service the recipient rather than rely on others outside the household. CONCLUSIONS: Since the recipients under investigation typically possess core communication restrictions and highly individualised needs, it is speculated that carers perceive family members as better able to interpret and meet the sporadic and individualised care demands of recipients. IMPLICATIONS: Given the low usage of respite services among primary informal carers, policy makers and health organisations need to dispel the "one size fits all" approach to support services for households.

Support and Informal Care

Learn Now, Live Well : an educational programme for caregivers / Kate White, Natalie D'Abrew, Kirsten Auret, ... [et al.]. - In: International Journal of Palliative Nursing, ; vol. 14 (2008) nr. 10 (24 okt.), p. 497-501

Evaluates the effectiveness of the Learn Now; Live Well (LNLW) educational programme on enhancing the knowledge and support of caregivers living with a life-threatening illness. Results: At completion of the programme, a substantial reduction in care isolation, and increase in care confidence and knowledge was evident. The findings from the interviews indicated strong support, reassurance and having a skilled facilitator as the fundamental components for the success of the programme. Conclusion: The LNLW programme successfully improved carers' access to support across a range of sectors, increasing confidence through education and support.

Putting evidence into practice : nursing assessment and interventions to reduce family caregiver strain and burden / N.J. Honea, R. Brintnall, B. Given, ... [et al.], 2008. - In: Clinical Journal of Oncology Nursing ; vol. 12 nr. 3, p. 507-516

Family caregiving often is associated with multiple rewards, yet the diversity and intensity of caregiving roles also can result in caregiver strain and burden. Using interventions to reduce the strain and burden on caregivers of patients with cancer is an important role nurses play. This article is a critical review and synthesis of the evidence regarding assessment tools and interventions aimed at reducing caregiver strain and burden in the oncology population.

Saying it in song : music therapy as a carer support intervention / Julian O'Kelly. - In: International Journal of Palliative Nursing ; vol. 14 (2008) nr. 6 (27 juni), p. 281-286

The burdens experienced by informal caregivers are likely to increase in the context of the UK's ageing demographic, and the movement towards more home-based care for those with long-term, chronic or palliative illnesses. This article combines an overview of our understanding of caregiving and carer support interventions, with an outline of the evidence base for music therapy in palliative care.

A Systematic Review of Interventions for Carers in the UK: Outcomes and Explanatory Evidence / Elizabeth Victor

A systematic review of the research evidence on carer support by Elizabeth Victor, PhD researcher at the School of Sociology and Social Policy, The University of Nottingham. The research was funded by the Economic and Social Research Council (ESRC) in collaboration with The Princess Royal Trust for Carers. Download pdf: http://www.carers.org/professionals/adult-carers/articles/carer-support-research,4309,PR.html

Combining Work and Informal Care

Spousal caregiving in late midlife versus older ages : implications of work and family obligations / Julie C. Lima, Susan M. Allen, Frances Goldscheider, ... [et al.]. - In: The Journals of Gerontology Series B ; vol. 63 (2008) nr. 4 (juli), p. 255-265

This study examined life-stage differences in the provision of care to spouses with functional impairment.We examined 1,218 married adults aged 52 and older from the 2000 wave of the Health and Retirement Study who received impairment-related help with at least one activity of daily living. We examined the differential likelihood that spouses served as primary caregiver and the hours of care provided by spousal primary caregivers by life stage.

We found that late middle-aged care recipients were more likely than their older counterparts to receive the majority of their care from their spouse but received fewer hours of spousal care, mostly when spouses worked full time. Competing demands of caring for children or parents did not affect the amount of care provided by a spouse.Late middle-aged adults with functional limitations are more likely than older groups to be married andcared for primarily by spouses; however, they may be particularly vulnerable to unmet need for care. As the baby boom generation ages, retirement ages increase, and federal safety nets weaken, people with health problems at older ages may soon find themselves in the same caregiving predicament as those in late middle age.

Policy and Informal Care

Carers at the heart of 21st-century families and communities / Department of Health. - London : Department of Health, 2008, p. 163 p.

This strategy sets the government agenda for supporting carers over the next 10 years ranging across the span of government's responsibilities. Short-term changes are to be implemented over the next three years, and longer-term priorities are identified for the next 10 years. The strategy addresses breaks, personalisation of services, income, information and advice, the workplace, training for the workforce, access to employment, emotional support, the health of carers and the specific needs of young carers. . The strategy is based on the views and concerns of carers themselves, drawn from consultation across the country.

http://www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/DH_085345

4. meetings and other events

IAGG Congress Gerontology, Paris, July 2009

The Eurocarers' research group is organising a symposium at the 19th IAGG World Congress of Gerontology and Geriatrics in Paris, July 2009. The title of our symposium is: Supporting sustainable informal care - the EUROCARERS framework.

Demographic and epidemiological trends increase the need for informal care. EUROCARERS is a European network aiming to improve the situation of carers in Europe. Members are carers' organizations and R&D-organizations. This symposium will address the main topics that are relevant to informal carers and that are covered by research of Eurocarers' R&D-members. We will use an innovative symposium format: it outlines our conceptual framework (Henk Nies/Geraldine Visser), presents the papers in an 'academic speed dating' format and offers participants the choice between three or four papers with the option to interact with the particular researchers. Papers are:

§ Support for carers and the importance of information, advice, advocacy and training (Giovanni Lamura/Susanne Kohler/Hanneli Döhner/Sebastian Fischer):

§ Technology based services for carers (Elizabeth Hanson/Lennart Magnusson/Geraldine Visser)

§ Cash for care: implications for carers (Caroline Glendinning/Hilary Arksey/Henk Nies).

§ Experiences of carers in using formal support and the role of assessing carers (Benedicte de Koker/Therese Jacobs/Tiina Autio).

§ Reconciliation of work and care (Sue Yeandle).

More information: http://www.gerontologyparis2009.com

5. Contact details for national carers' organizations

ountry	Official name	Website
Belgium	Ons Zorgnetwerk	www.onszorgnetwerk.be
	Werkgroep Thuisverzorgers	www.werkgroepthuisverzorgers.be
Finland	Suomen Omaishoidon Verkosto	www.omaishoidonverkosto.fi
	Omaishoitajat ja Läheiset -Liitto ry	www.omaishoitajat.com
France	Association Française des Aidants Familiaux	www.aidants.fr
Germany	"Wir pflegen - Interessenvertretung begleitender Angehöriger und Freunde in Deutschland"	http://www.wir-pflegen.net/
Ireland	Caring for Carers Ireland	www.caringforcarers.org
	The Carers Association Ireland	www.carersireland.com
Netherlands	Mezzo	www.mezzo.nl
Scotland	The Coalition of Carers in Scotland	www.carersnet.org
Sweden	Anhörigas Riksförbund	www.ahrisverige.se
UK	Carers UK	www.carersuk.org

6. next eurocarers' newsletters

The next Eurocarers' Newsletters will be issued in June 2009 and November 2009. Do you have input or nice pictures for the newsletter? Please send it to Geraldine Visser, Vilans, g.visser@vilans.nl or Jolanda Elferink, MOVISIE, j.elferink@movisie.nl. The deadline for the next edition will be May 27^st.