The safe self management of medicines will be affected by the presence of dementia. A qualitative study using grounded theory was undertaken by a community nursing organisation in Melbourne, Australia, in order to develop a strength-based and person-centred approach to the assessment of medication ability. The perspectives of the person with dementia and their carers were explored to see if there were any significant differences in their medication management experiences when compared to those of older adults without dementia and their carers. People with dementia are able to sustain self management of their medicines using established routines and strategies. As cognitive changes affect short-term memory, external strategies and task allocation to family members are introduced by the individual to support their continuing independence. The family member assumed the carer role as their concern for medication safety increased, but this role engendered stress and a burden that was unacknowledged by the health professional.
Objective: Research involving people with dementia is vital to appropriately inform policy and practice decisions affecting this population. As dementia-care researchers, we frequently advocate to Human Research Ethics Committees for the right of people with dementia to choose whether to participate in research. This brief report provides some considerations for researchers and ethics committees.Method: Descriptive summary of principles that argue for inclusion of people with dementia in research studies.Results: Specifically excluding people living with dementia from research because of perceived cognitive impairment is inappropriate in light of human rights principles and the right to contribute to evidence-based care.
Conclusions:There is a difference between capacity to provide informed consent and ability to provide perspectives that are valid for each individual. Providing the opportunity for a person with dementia to participate in research and offering support to do this is a matter of human rights. How to cite this article: O'Connor CMC, Liddle J, O'Reilly M, et al. Advocating the rights of people with dementia to contribute to research: Considerations for researchers and ethics committees.
Dementia may alter the experience of pain and the ability to communicate it; this will, in turn, result in poor pain detection and inadequate treatment. The aim of this literature review is to identify the observational pain scales that have clinical utility and feasibility for use with people living with dementia in the community by district nurses in their daily practice. It was found that a consensus could not be reached on which tool to use in clinical practice. A further evaluation of the Non-communicative Patients Pain Assessment Instrument has improved its feasibility for use in the community environment, as it can be administered by family carers. This literature review concludes that observational pain scales need to be validated for use in the community and that there is a need to consider the involvement of the informal carer in the assessment of pain.
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