BackgroundThe need for carers to manage medication-related problems for people with dementia living in the community raises dilemmas, which can be identified by carers and people with dementia as key issues for developing carer-relevant research projects.A research planning Public Patient Involvement (PPI) workshop using adapted focus group methodology was held at the Alzheimer’s Society’s national office, involving carers of people with dementia who were current members of the Alzheimer’s Society Research Network (ASRN) in dialogue with health professionals aimed to identify key issues in relation to medication management in dementia from the carer viewpoint. The group was facilitated by a specialist mental health pharmacist, using a topic guide developed systematically with carers, health professionals and researchers. Audio-recordings and field notes were made at the time and were transcribed and analysed thematically. The participants included nine carers in addition to academics, clinicians, and staff from DeNDRoN (Dementias and Neurodegenerative Diseases Research Network) and the Alzheimer’s Society.FindingsSignificant themes, for carers, which emerged from the workshop were related to: (1) medication usage and administration practicalities, (2) communication barriers and facilitators, (3) bearing and sharing responsibility and (4) weighing up medication risks and benefits. These can form the basis for more in-depth qualitative research involving a broader, more diverse sample.DiscussionThe supported discussion enabled carer voices and perspectives to be expressed and to be linked to the process of identifying problems in medications management as directly experienced by carers. This was used to inform an agenda for research proposals which would be meaningful for carers and people with dementia.

Neuropsychiatric symptoms are frequent in people with dementia, result in distress for the people experiencing them and their caregivers, and are a common precipitant of institutional care. The safe and effective treatment of these symptoms is a key clinical priority, but is a long way from being achieved. Psychological interventions are recommended as the first line treatment strategy in most good practice guidelines, and there is emerging evidence of efficacy for agitation and depression. Neuroleptics remain the mainstay of pharmacological treatment, although meta-analyses indicate that they are mainly of benefit for the short-term (up to 12 weeks) treatment of aggression in people with Alzheimer's disease, and there have been increasing concerns about serious adverse effects including mortality. The evidence is limited for other pharmacological approaches for the treatment of agitation, and psychosis in people with Alzheimer's disease is limited, but post-hoc analyses do indicate that memantine may be a promising therapy and aromatherapy may be a useful alternative. Autopsy studies indicate that the adrenergic system may be an important therapeutic target. Clinical experience suggests that antidepressants are effective in people with severe depression in the context of dementia, but the evidence base regarding the broader value of antidepressants is far from clear. There are very few trials specifically focusing upon the treatment of neuropsychiatric symptoms in common non-Alzheimer dementias, which is a major limitation and urgently needs to be addressed to provide an evidence base to enable the safe and effective treatment of these individuals.

The drive for evidence based practice and cost-effective use of pharmacological therapies has advantages, but can also be problematic. These difficulties are particularly challenging in the context of long-term conditions, such as Alzheimer's disease. The complexity of the illness, the variable and complex pattern of service use and the difficulty of conducting long term clinical trials are extremely difficult to factor into a meaningful cost effectiveness model. In Alzheimer's disease, the additional impact on caregivers as well as the person with dementia should be considered. In the current article we give a brief overview of the clinical effectiveness of cholinesterase inhibitors for the treatment of Alzheimer's disease, discuss in detail the NICE appraisal of these treatments in the UK as an example of an attempt at a standardised evaluation of cost-effectiveness and discuss a proposed way forward to achieve a unified and consistent approach to the assessment of cost-effectiveness for anti-dementia therapies.

BackgroundElderly people represent the majority of stroke cases worldwide. Post-stroke sequelae frequently lead to a more isolated life. Restricted social relations render older individuals with stroke a vulnerable group, especially in terms of social reintegration. Reintegration into the community after a stroke largely depends on support from the family. However, close relatives are at risk of becoming overburdened. The aim of this study is to investigate the effect of a novel self-management intervention to support elderly people after stroke.Methods/DesignRandomized controlled trial. Two weeks before discharge from a rehabilitation hospital/center, individuals with stroke aged > 65 years will be randomized either to a group receiving conventional neurorehabilitation (control) or to an additional novel self-management intervention. In the intervention group, patients with stroke will be offered eight self-management sessions of 45–60 min duration by a physiotherapist or an occupational therapist during a period of nine months after discharge. Inclusion will continue until at least 35 individuals in each group have been recruited.Study outcome measurements: Stroke Self-efficacy Questionnaire, a short version of Stroke Specific Quality of Life Scale, Impact on Participation and Autonomy and Caregiver Burden Scale. Furthermore, physical activity will be assessed using accelerometers. All outcomes except “impact on participation” and “autonomy” will be assessed at baseline, three months, and nine months after discharge. Impact on participation and autonomy will be assessed at three and nine months after discharge.Patient, informal caregiver, and therapist satisfaction will be examined by way of questionnaires and interviews.DiscussionSelf-management interventions are promising strategies for rehabilitation, potentially increasing self-efficacy, quality of life, as well as participation and autonomy. The introduction of a novel self-management intervention in combination with traditional physical and occupational therapy may enhance recovery after stroke and quality of life and lessen the burden on relatives. This trial “Stroke - 65 Plus. Continued Active Life,” will provide further evidence of self-management strategies to clinicians, patients, and health economists.Trial registrationClinicalTrials.gov, NCT03183960. Registered on 12 June 2017.Electronic supplementary materialThe online version of this article (10.1186/s13063-018-2961-4) contains supplementary material, which is available to authorized users.

Background A good portion of stroke patients in Western countries are over 65 of age. Because of sequelae, they often lead more isolated lives after the stroke. In terms of social reintegration, this group of patients is especially vulnerable. Reintegration into the community post-stroke greatly depends on support from family. However, the stroke individual’s closest relatives are at risk of becoming overburdened. The objectives are to describe the social psychological mechanisms and processes involved in a novel self-management intervention, and to evaluate their feasibility and acceptability from the stroke individuals’, the informal caregivers’ and the mentors’ perspectives, before implementation into a randomised controlled trial. Methods Qualitative interviews were conducted and analysed using a phenomenological approach. Informants comprised four stroke individuals, three informal caregivers and two mentors. The UK Medical Research Council Framework for developing and evaluating complex interventions was used in the evaluation design of the intervention. Results Six social psychological mechanisms were revealed as the mentors’ focus areas in their interaction with stroke individuals and informal caregivers: a) Tailored approach – by individual preferences, b) Dialogue-based communication, c) Development of a good relationship, d) Transfer of activities to everyday and social contexts, e) Involvement of relatives and social networks, and f) Supporting tools – to optimise actions and communication. Furthermore, interaction processes between the stroke individual and the informal caregiver and the mentors occurred, and generated processes of change and learning in the stroke individual and the informal caregiver. The mechanisms and processes described were perceived as feasible and acceptable to the informants – with the exception of the technological supporting tool. Conclusion The social psychological mechanisms and processes involved in the intervention indicated a positive association to self-management behaviour from the informants’ perspectives. The informants evaluated them to be relevant and meaningful in the novel self-management intervention. Trial registration ClinicalTrials.gov NCT03183960. Reg. June 15, 2017. Electronic supplementary material The online version of this article (10.1186/s12913-019-4150-x) contains supplementary material, which is available to authorized users.