Dementia

‘Thou shalt not lie’; ‘the truth, the whole truth, and nothing but the truth’. Both morality and the law contain clear statements about the importance of veracity. Yet, as Ginny Russell so eloquently describes, based upon personal experience with her mother in the UK, truth telling in dementia is fraught with problems. The problems are not only ethical, but can also be practical and emotional. They can arise on a daily basis for the family and friends of people with dementia, as well as for care staff and professionals.

I am the daughter and one of the main carers for my 90-year-old mother. My mother was diagnosed with dementia in 2015. In this article, I reflect on dealing with my mother's progressive disability, with a focus on one experience. I explain why I believe withholding the truth is sometimes an acceptable, or even a preferable, course of action. The article illustrates how differing advice and lack of guidance about dementia diagnosis and 'truth-telling' play out in practice.

Distressing symptoms in dementia are hard to manage for many family carers. This article explores practitioners' perceptions of the barriers to accessing skilled behaviour management support encountered by carers. A survey of cases referred to the English National Health Service (<i>n</i> = 5,360) was followed by in-depth group discussions and practitioner interviews. Data revealed that practitioners focused on care home residents or older people with mental health problems other than dementia, rather than community-dwelling people with dementia and families.

Background Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereavement has not been examined.

With ageing populations and greater reliance on the voluntary sector, the number of volunteer-led peer support and befriending services for carers of people with dementia in England is set to increase. However, little is known about the experiences of the volunteers who deliver these interventions, many of whom are former carers.

The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia.

Family caregiving can be dened in many ways. Schulz and Martire (2004) describe caregiving as: … the provision of extraordinary care, exceeding the bounds of what is normative or usual in family relationships. Caregiving typically involves a significant expenditure of time, energy and money over potentially long periods of time; it involves tasks that may be unpleasant and uncomfortable and are psychologically stressful and physically exhausting (p. 240).

Objectives: To explore the acceptability of telepresence robots in dementia care from the perspectives of people with dementia, family carers, and health professionals/trainees, and investigate the utility of a social presence assessment tool, the Modified-Temple Presence Inventory (Modified-TPI), for people with dementia. Method: A mixed-methods pilot study conducted in a social robotics laboratory.

Objectives: To demonstrate the power of integrating three theoretical perspectives (Mentalization Theory, Perceptual Control Theory and the Communicative Impact model), which jointly illuminate the communication challenges and opportunities faced by family carers of people with dementia. To point the way to how this framework informs the design and delivery of carer communication and interaction training. Method: Conceptual synthesis based on a narrative review of relevant literature, supported by examples of family carers.

The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39-93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data.