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Involuntary Treatment in People with Cognitive Impairment

THE USE OF INVOLUNTARY TREATMENT IN PEOPLE WITH COGNITIVE IMPAIRMENT LIVING AT HOME
Angela MHJ Mengelers, MSc1; Vincent Moermans, MSc, RN1,2; Michel HC Bleijlevens, PhD1; Hilde Verbeek, PhD1; Liz Capezuti, PhD3; Koen Milisen, PhD, RN4, 5; Jan PH Hamers, PhD1
1 Maastricht University, CAPHRI Care and Public health Research Institute, Maastricht, the Netherlands
2 Department of Nursing, White Yellow Cross Limburg, Genk, Belgium
3 Hunter College and the Graduate Center of City University of New York, New York, United States
4 Department of Public Health & Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Leuven, Belgium
5 Division of Geriatric Medicine, University Hospitals Leuven, Leuven, Belgium


Key highlights:

  • Involuntary treatment is used in 39% of the people with cognitive impairment receiving home care in the Netherlands and in 51% of the people with cognitive impairment receiving home care in Belgium
  • Risk factors for involuntary treatment include cognitive impairment, higher ADL dependency and higher perceived caregiver burden by the informal caregiver
  • Informal caregivers and general practitioners are more accepting of involuntary treatment use, find non-consensual care and physical restraints less restrictive and feel more comfortable using these measures, compared with nursing staff and other health care professionals

With the ageing population, the number of people with cognitive impairment is increasing, worldwide. The majority of older people live at home and wish to live at home as long as possible, in an environment that feels familiar and safe. In most Western countries the government supports this by an active ‘ageing in place’ policy. However, allowing older people to remain at home  longer is challenging, since they often require complex and extensive assistance from informal and professional caregivers, and increased social support (Hamers et al., 2016).

Providing care for people with cognitive impairments can be very challenging. How do we create a balance between providing quality of care and safety while maintaining dignity and autonomy? Should we lock the door to prevent people from going outside, or respect their freedom with the risk that they get lost? Distressed by these dilemmas, caregivers may choose quick but potentially harmful solutions that can negatively affect the person’s quality of life, such as forcing people to eat, administering psychotropic medication, or using physical restraints (Hamers et al., 2016; Mengelers et al., 2019; Moermans et al., 2018). Care to which the client resists and/or does not provide consent for are defined as involuntary treatment (Hamers et al., 2016). Involuntary treatment includes 1) physical restraints, defined as any action or procedure that prevents a person’s free body movement to a position of choice and/or normal access to his/her body by the use of any method that is attached or adjacent to a person’s body and that he/she cannot control or remove easily (Bleijlevens et al., 2016), 2) psychotropic medication, defined as substances that act directly on the central nervous system, affecting mood, cognition and behavior, and 3) non-consensual care, care that restricts the patient’s freedom of living (e.g. locking in a room, use of electronic surveillance and forced administration of food or hygiene) (Hamers et al., 2016).

In the Netherlands, regulations to prevent and reduce involuntary treatment such as the “Care and Coercion” act are being developed. This act regulates the right of people with intellectual disabilities and people with psychogeriatric disorders and will go into effect in January 2020. The starting point is that involuntary treatment and coercive measures are not appropriate methods of care for older or disabled people. A multi-disciplinary step-by-step plan must be followed to stimulate voluntary care and indicate possible alternative interventions.

Although the literature on involuntary treatment in home care is scarce, recent studies indicated that involuntary treatment is common practice in home care (Hamers et al., 2016; Moermans et al., 2018). A questionnaire was developed to assess involuntary treatment use and possible associated factors in two cross-sectional studies in the Netherlands and Belgium. District nurses and dementia case managers completed the questionnaire for every selected client with cognitive impairment within their caseload. A dementia case manager is an independent professional caregiver, often with a nursing background who coordinates care for people with (suspected) dementia and their caregiver. Results indicate that involuntary treatment was used in 39% of the people with cognitive impairment who were also receiving home care in the Netherlands and 51% in Belgium (Hamers et al., 2016; Moermans et al., 2018). In both countries non-consensual care was the most common type of involuntary treatment (79% and 73%, respectively), followed by psychotropic medication (41% and 43%, respectively). Physical restraints were the least common measures (7% and 38%, respectively). Involuntary treatment was more likely to be applied in people with higher activities of daily living (ADL) dependency and poorer cognitive abilities. Besides, involuntary treatment was associated with higher perceived caregiver burden by informal caregivers.

Informal caregivers play an important role in the request and application of involuntary treatment. In more than 70% of the cases of involuntary treatment use, it was requested by informal caregivers, both in the Netherlands and Belgium. Nursing staff requested the use of involuntary treatment in 33% of the cases in the Netherlands and 43% in Belgium. Involuntary treatment was applied mostly by nurses in Belgium (81%) and informal caregivers in the Netherlands (72%) (Hamers et al., 2016; Moermans et al., 2018). Some caregivers might not be aware that they provide involuntary treatment, such as locking a door when leaving the house or hiding medication (Mengelers et al., 2019). Also, some types of involuntary treatment such as providing medication or assisting with feeding might be considered as necessary interventions and there is a lack of consensus regarding what constitutes “good” care (Mengelers et al., 2019). Common reasons for caregivers to use involuntary treatment include, their belief that those measures prevent harm or wandering, or postpone nursing home admission. Others use these measures to respite from other caregiving activities. (Scheepmans et al., 2014). However it may be questioned if one can justify the use of involuntary treatment for these reasons since some types of involuntary treatment are not used correctly, used for too long or for the wrong reason, and have shown to be ineffective. Besides it is associated with negative effects including aggression, agitation and even injuries (Moermans et al., 2018).

To prevent involuntary treatment in home care it is important to foster dialogue between formal and informal caregivers regarding the decision-making process and possible alternative interventions. The study of Mengelers et al. (2019) indicates that informal caregivers and general practitioners may have more positive attitudes towards the use of involuntary treatment compared with nursing staff and other health care professionals (e.g. physical therapist, psychologists), indicating that they are more accepting of involuntary treatment. Attitudes of informal caregivers living with dementia patients did not differ from attitudes of those not living with dementia patients. Acceptance of involuntary treatment is associated with perceived burden: caregivers who sometimes, often or always experience burden were more accepting of involuntary treatment than caregivers who never or rarely experienced burden. In line with these findings, we also found that informal caregivers and general practitioners perceived non-consensual care and physical restraints less restrictive for people with dementia, and indicated feeling more comfortable when using these measures than nursing staff. No differences were seen in perceived restrictiveness of, and discomfort in, using psychotropic medication between formal and informal caregivers.

Future studies should provide insight into why involuntary treatment is applied and how this process is experienced by both formal and informal caregivers. In addition, it is important to study what the challenges and needs are of caregivers providing care for people with cognitive impairment who live at home. Based on this input, researchers (Heale, 2019) emphasize the development of an multi-factorial approach to provide professional and informal caregivers the necessary knowledge and tools to prevent involuntary treatment, by adapting a client-oriented care approach and the use of alternatives.

For further reading:

  • Bleijlevens, M. H., Wagner, L. M., Capezuti, E. and Hamers, J. P. (2016). Physical Restraints: Consensus of a Research Definition Using a Modified Delphi Technique. Journal of the American Geriatrics Society, 64, 2307-2310.
  • Hamers, J. P., Bleijlevens, M. H., Gulpers, M. J. and Verbeek, H. (2016). Behind Closed Doors: Involuntary Treatment in Care of Persons with Cognitive Impairment at Home in the Netherlands. Journal of the American Geriatrics Society, 64, 354-358.
  • Heale, R. (2019). Better support and education is imperative to bolster informal at-home carers of people with cognitive impairment and reduce incidences of involuntary treatment of older adults in their homes. Evidence-based nursing, ebnurs-2018-103028.
  • Mengelers, A. M., Bleijlevens, M. H., Verbeek, H., Capezuti, E., Tan, F. E. and Hamers, J. P. (2019). Professional and family caregivers’ attitudes towards involuntary treatment in community‐dwelling people with dementia. Journal of advanced nursing, 75, 96-107.
  • Moermans, V. R., Bleijlevens, M. H., Verbeek, H., Tan, F. E., Milisen, K. and Hamers, J. P. (2018). The use of involuntary treatment among older adults with cognitive impairment receiving nursing care at home: A cross-sectional study. International journal of nursing studies, 88, 135-142.
  • Scheepmans, K., de Casterlé, B. D., Paquay, L., Van Gansbeke, H., Boonen, S. and Milisen, K. (2014). Restraint use in home care: a qualitative study from a nursing perspective. BMC geriatrics, 14, 17.

Angela Mengelers works as a PhD student at the department of Health Services Research at Maastricht University. Her research focuses on involuntary treatment in home care and aims to develop a multi-component intervention to prevent and/or decrease involuntary treatment use at home.

Vincent Moermans works as a PhD student at the department of Health Services Research at Maastricht University and for a home health care organization, the White Yellow Cross in Belgium. His research focuses on the prevention and reduction of involuntary treatment at home.

Excerpted as reprint from the IPA Bulletin, Volume 36, Number 1.

Acknowledgements

Acadia Pharmaceuticals Otsuka Pharmaceuticals Cambridge University Press Avanir Pharmaceuticals
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