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Case Study C

Trial regarding care provided to consumers with severe dementia

The study

Dr C wants to study the care provided to rest home residents with severe dementia. Dr C believes that conventional care for such consumers is task-focused, concerned primarily with the consumer's physical needs and daily activities. Dr C thinks conventional care may be neglecting consumers' psychosocial needs, meaning that many consumers with dementia are spending many hours alone and emotionally distressed. Dr C thinks that part of the problem may be that a dementia diagnosis is treated as diminishing a consumer's personhood, leading staff to reduce their efforts to establish and maintain relationships with the consumer.

Dr C proposes a study that would randomly allocate consumers with severe dementia into two groups, each group receiving a different type of care. Group 1 would receive conventional care, which focuses on physical task-oriented practices and physical needs. Group 2 would receive "interactive care", an alternative to conventional care that is intended to maintain personhood as dementia progresses. "Interactive care" includes a greater focus on the psychosocial needs of the consumer. At this stage, there is very little evidence about the benefits or risks associated with "interactive care". However, Dr C believes that the proposed study could supply evidence that would lead to improvements in the care provided to consumers with dementia.

It is not known whether the research would be in the participants' best interests. They would have to undergo additional assessments as part of the research, but the additional assessments could benefit the participants if the increased contact with the researchers was beneficial to them, or changes in their condition were picked up that would not otherwise have been noticed. On the other hand, there is a risk that some participants may find the additional contact distressing.

The proposed trial would take place over four months. Researchers would assess the participants' agitation levels, psychiatric symptoms and quality of life before and directly after the trial period, and then again four months after the conclusion of the trial. 

The fact that a consumer has dementia does not necessarily mean that he or she is unable to provide informed consent. Some may be capable of providing informed consent with appropriate support, or they may have intermittent periods when they are able to provide consent to participate in the research. Dr C also proposes to include in the study consumers who are not able to consent.

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