Background: There is a paucity of literature detailing the expectations that people with dementia have for the future; therefore the capacity to reflect their views in service provision is limited. Aim: This paper reports the findings of research that explored and described experiences of people diagnosed with dementia and their expectations of their support needs and how they wished to live their lives.Method: An application of the grounded theory method was used and data were collected from 24 participants using semi structured interviews. Coding principles and the constant comparative method of analysis central to grounded theory were used to analyse data. Findings: The core problem that emerged was conceptualised as losing control. This concept encompassed loss of role function and independence, uncertainty about the future and fear of being a burden. To manage the problem of losing control, participants engaged in a process of finding meaning where they sought answers to address their concerns and implemented strategies to assist them to maintain connectedness to their pre-diagnosis life for as long as possible. Discussion: People with dementia have limited knowledge on a likely dementia trajectory and find it difficult to identify their future support needs. Health care providers are required to help people with dementia identify what these needs might be and how they can maintain connectedness to their prediagnosis life. Conclusion:To empower people living with dementia, information needs to be made available to them and their families to help them construct their plans for the future.

Background What it means to live with dementia is changing. Autonomy, independence and continued community involvement are now recognised goals. As a result, new initiatives are required to support people with dementia to sustain their quality of life, update community understanding and reflect resultant change in community attitudes. Measuring the impact of such initiatives can help determine the extent of their success, inform needs for further intervention and, ultimately, shape policy. Objective To discover – or, if this could not be achieved, develop – a questionnaire measuring community attitudes towards people with dementia reflecting these newly recognised goals in terms of both content and expression. Methods A four-stage approach was used in this research: a scoping review of the literature, questionnaire development and expert review, questionnaire piloting, including with people living with dementia and their families, and preliminary psychometric testing. Results The review failed to retrieve a suitable existing questionnaire. A ten-item questionnaire, the Dementia Community Attitudes Questionnaire was developed, content validity was established by expert review and piloting led to refinements. Exploratory factor analysis ( N = 92) generated an interpretable three-factor solution. Cronbach’s alpha coefficient for Factor 1, Engagement, was good (0.855); for Factor 2, Challenges, and Factor 3, Decision-Making, reliability was acceptable (0.785 and 0.709, respectively). Conclusion Supporting people with dementia to sustain their quality of life requires new initiatives and suitable measures to evaluate their impact. The Dementia Community Attitudes Questionnaire was developed with input from people with dementia, their families, and relevant experts. Items reflect current opportunities for people with dementia to retain their independence, autonomy and community engagement for as long as possible. Following further psychometric testing, this new questionnaire may be useful to evaluate such initiatives.

Background People with dementia continue to voice concerns that health professionals are reluctant to engage with them about the planning of their care and support. Instead, their perspective is that such plans are often made by others and fail to reflect their wishes. Objective This review aimed to examine investigations of the participation of people living with dementia in the planning of their care and support, when they have also provided study data. Methods An integrative literature review was conducted to identify, critique, and synthesise relevant research findings. Eight electronic databases were searched to identify peer reviewed journal articles that met inclusion criteria. In addition, reference lists of included articles were searched, and a subject expert was consulted about any possible omissions. Results From the 346 articles accessed, seven met inclusion criteria for review. The quality appraisal showed that one article reported only pilot data; several more reported small sample sizes; and, in two instances, there was a lack of information about the psychometric properties of data collection tools and about recruitment and attrition rates. Conclusions There has been limited investigation of the participation of people with dementia in the planning of their support when they have also contributed research data. Findings provide some evidence of their participation by attending education programme, setting goals in cognitive rehabilitation therapy and contributing to advance care planning.

Background There is little evidence that outlines how family carers understand the person with dementia’s perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim This research aimed to explore and describe family carers’ experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia’s expectations for the future and what they believed was important for the person to whom they provided care. Method Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers’ perspectives of the changing nature of decision making during the dementia trajectory. Conclusion Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is ‘person centred’ now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.