Summary

Potentials and Risk Factors of Family Caregiving for Older
(Update: 31.12.2010)
People (PURFAM)
Summary
Point of Departure and PURFAM Concept
Caregiving by family members constitutes the primary source of assistance in Germany,
affecting nearly 70% of the care-dependent individuals. The extent and the quality of care
provided by family members are generally high. Caregiving by family members also has its
risks, however, including physical and psychological abuse as well as neglect of the patient.
Financial exploitation as well as restricting the patient's freedoms against their will are also
forms of violence. PURFAM's main concerns and goals are preventing the abuse and neglect
of older persons being cared for by family members through early detection of difficulties
and strengthening of available resources. In addition, through the integration of "bestpractice" examples, current practice can be optimized.
The individual steps of the project are to analyze best-practice approaches in the existing
literature and from interviews with experts, conduct a workshop with international experts
and then, based on the expertise gained, develop early detection measures. A target-group
oriented training, integrating preventive support measures, will be developed to be
implemented with staff in home services for care recipients. The nationwide implementation
of the particular checklist for early detection and the further assessment procedures will be
tied to an evaluation of the intervention measures.
The Working Definition of "Elder Abuse" in the Project
From both a research and a clinical perspective, the current heterogeneous definitions and
taxonomies of violence are seen as a significant barrier in understanding the problem. As its
working basis, the PURFAM project has adopted the definition frequently cited in the
relevant literature that was developed by "Action on Elder Abuse" (UK). This definition has
been used by the "International Network for the Prevention of Elder Abuse" well as by
others: "Elder abuse is a single or repeated act, or lack of appropriate action, occurring
within any relationship where there is an expectation of trust, which causes harm or distress
to an older person" (e.g., Biggs et al., 2009; WHO / Krug, 2002; WHO, 2008). "Elder abuse" is
conceptualized as physical and psychological abuse, neglect, financial exploitation, and
sexualized violence.
Compared to the entire elderly population, the frequency of abuse of elderly persons
dependent on caregiving is assumed to be much higher. A large number of cases remain
undetected due to the inaccessibility of those vulnerable persons requiring care because of
their extreme frailty or dementia. Numerous studies point to cumulative effects of the
burdens of caregiving on the caregiving relatives. In the LEANDER study (Zank & Schacke),
particularly stress arising from aggressive or confused behavior on the part of the patient
relative being cared for was found to increase the risk of aggression and violence on the part
of the caregiver. Other risk factors were violence in the relationship before the need for care
arose, social isolation of the caregiver, the presence of dementia, and cognitive limitations of
the caregiving relative.
International Best-Practice Approaches
Numerous international best-practice examples have been incorporated into the PURFAM
project. Approaches that have proven successful in other countries have been evaluated for
their functionality here in a national context. In particular, the wide-reaching structural and
legislative developments in the USA, Israel, and Japan are exemplary and as a consequence,
were presented at PURFAM's international expert workshop. Procedures that have already
been implemented in Germany for children and youth as well as approaches used to counter
violence against women offer further creative impulses at micro-, meso-, as well as macrosocietal levels. Of particular interest are network management experiences at regional and
subject-specific levels, the formalization of courses of action, and the regulation of legal
responsibilities. Clear is that a low-threshold access to this extremely vulnerable target
group as well as a coordinated network of intervention measures are definitely required.
Interviews with National Experts
The expert interview is a form of qualitative, guided interview that is designed to capture
and describe the procedural and expert knowledge gained by those in the professional field.
Based on the gerontological perspective and interdisciplinary direction of PURFAM,
information from twenty-two experts from different disciplines and fields of practice all over
Germany were taken into account. Several levels of action were included.
The latest research findings have been included from the disciplines of law, nursing science,
criminology, geronto-psychiatry, psychology, and social work. Further criteria for inclusion
were dementia-specific knowledge and knowledge of how to handle demanding,
provocative behavior in dementia patients, as well as familiarity with local caregiving
agencies and care- and case-management.
In addition to the relevant research literature, expertise from applied practice was
intentionally integrated into the data material. The participating advisors/supervisors for
nursing care and the elderly as well as the management and staff of nursing services operate
on a concrete practical level and have direct contact to the targeted group. Their respective
institutional logic will be taken into consideration in the evaluation of PURFAM. By including
consultants from relevant organizations providing help for the aged and a representative
from a state association for the elderly, discourse from committees on the state and federal
levels could be obtained. Staff members from the medical services of the health insurance
agencies (MDK) as well as from municipal offices with their specific competences also
contributed their respective detailed knowledge about the target group.
Through two legal experts from the BMFSFJ, significant insights from the fields of "Violence
against Women" and "Violence against Children and Adolescents" were able to be
incorporated into the body of material. For example, the BMFSFJ published a representative
study targeting women, with follow-up secondary analyses that underline the need for
action, particularly for those who are handicapped and of very advanced age.
Multiple Needs for Action
The subject matter and the need for action require very sensitive treatment in the way they
are communicated and presented to the public. The phenomenon of violence in family
caregiving is particularly susceptible to evoking scandals or taboos. Nevertheless, a
multitude of caregiving family members provide a great range of high quality support
services to their relatives. Furthermore, violent actions in family caregiving usually occur
without any intent to harm. Within the framework of their active publicity work, PURFAM is
making an effort to benefit the goals of prevention and the removal of taboos without
contributing to an unnecessary stereotype of older persons as potential victims, which
would thereby add to a distorted picture of aging. A significant finding that can be
confirmed: To stabilize home care, measures are needed both for early detection of the risk
of violence as well as for preventively introduced interventions.
Parameters of the Intervention Measure
In the PURFAM project, prevention of violence through early detection is made possible by
including professional staff with access to the family caregiving settings and a risk
assessment based on a formalized procedure. Nursing staff in home services for care
recipients that is, those persons who have direct contact with assistance-dependent elderly
persons and their relatives, receive a target-specific training in using the particular checklist
and the further assessment procedure developed by PURFAM.
The newly developed multidimensional instrument helps nursing staff to assess the complex
background situation through the systematization of observation and the recording of
relevant information. Through the choice of items, violence that is already taking place can
be identified and the increased risk for abuse and neglect can be detected.
The problematic behavior of the caregiving relative is often unintentional. The structured
and standardized procedure not only measures the phenomena of abuse and neglect but
also the individual stress/burden the caregiving relative is personally experiencing. Thus the
necessary actions in the particular situation, such as needs for counseling, relief, or
education can be identified at an early stage. In addition, nursing service personnel can be
trained to initiate or provide appropriate interventions. Here the acceptance of the elderly
persons affected and their relatives are valued as the primary factors for the success of the
interventions.
PURFAM International Expert Workshop
The recent expert workshop offered an international forum for presentation and discussion
of the results and experiences from research and practice.
The parameters of the interventions that PURFAM has developed so far were also discussed
at the workshop. This included questions as to assessment procedures, for example, the
appropriateness in terms of the integration into the work flow, and the practicability in
terms of the appropriate amount of effort on the part of nursing services. Other discussion
points relate to the contents of the corresponding training in the screening as well as the
spectrum of needs-appropriate interventions when there is a need for action. The legal
aspects also must be considered.
The workshops took place at the BMFSFJ (Federal Ministry for Family Affaires, Senior
Citizens, Women and Youth).
Structural Data
The project "Potential and Risks in Family Caregiving" (PURFAM) is a research-practiceproject located at two universities from 1.12.2009 until 30.11.2012. It is supported by the
German Federal Ministry for Family Affairs, Senior Citizens, Women, and Youth (BMFSFJ).
Directors:
Prof. Dr. Susanne Zank (University of Cologne, Chair of Rehabilitative Gerontology)
Prof. Dr. Claudia Schacke (Catholic University for Applied Sciences Berlin, Social Gerontology)
Staff
Dr. H. Elisabeth Philipp-Metzen (Project manager/Cologne)
Sonja Heidenblut, Constanze Steinhusen, Inka Wilhelm (Research assistants/Cologne)
Dr. Marion Bonillo, Susanna Saxl (Research assistants/Berlin)
Katy Schleicher, Denise Stein (Student assistants/Cologne)
Natalie Gaitzsch (Student assistant/Berlin)
The interdisciplinary composition of the team (Psychologists, Gerontologist, Educational
Scientist, Historian, Social worker, Nurse) reflects the gerontological-multidisciplinary task of
prevention-oriented measures in the field.