While in other illnesses there may be simple association between HRQL and an easily measurable clinical variable, in dementia this is not so. There are now instruments available with which to measure disease-specific HRQL directly in clinical trials and other studies that can yield informative data.

OBJECTIVEThis study analyzed narratives about experiences of real-time continuous glucose monitoring (CGM) in people with type 1 diabetes. RESEARCH DESIGN AND METHODSPeople with type 1 diabetes using CGM and caregivers completed an online survey. Questions included duration of CGM, frequency of sensor wear, funding, and a free narrative about experiences or views about CGM. We used qualitative framework analysis to analyze 100 responses; 50% of participants were aged ‡18 years. RESULTSMost participants (87%) used CGM with insulin pump therapy, 71% used sensors ‡75% of the time, and 66% received funding for CGM from the National Health Service. Four themes were identified: 1) metabolic control, 2) living with CGM (work and school, sleep, exercise, nutrition, frequency of self-monitoring of blood glucose [SMBG]), 3) psychological issues and patient/caregiver attitudes, and 4) barriers to CGM use (technical issues, financial issues, attitudes of healthcare professionals toward CGM). Despite some hassles, experiences were overwhelmingly positive, with improved glycemic control, diet and exercise management, quality of life, and physical and psychological well-being, as well as reduced frequency of SMBG. Technical problems included sensor inaccuracy and unreliability, and "alarm fatigue." The advantages of CGM used with an insulin pump with automatic suspension of insulin delivery during hypoglycemia were recorded by several participants, noting reduced hypoglycemia frequency and fear of nocturnal hypoglycemia. CONCLUSIONSPatient and caregiver narratives indicate that CGM is a valuable addition to diabetes care for many with type 1 diabetes.

The lack of consensus on measuring QoL in dementia suggests a need for a broader, more rigorously tested QoL measure.

In the UK, around two-thirds of older people with dementia are supported in the community, and family members are the most important source of dementia care.1 This is especially true among ethnic minority populations, who are less likely to access specialist healthcare or social care services.2 South Asian and Black Caribbean populations represent the largest ethnic minority groups in the UK, 3 yet the evidence base on dementia care in these communities is profoundly limited.4 Familial attitudes towards caregiving, and the way individuals appraise and adjust to the role, have implications for how they can best be supported. 5 With demographic ageing in all populations, we need to improve our understanding of the nature and needs of family carers of people with dementia and how these might vary between ethnic groups. Qualitative research presents an effective methodology for the exploration of cultural differences in caregiver attitudes and beliefs. 6 We therefore report data from a cross-cultural qualitative study of informal carers of people with dementia.

. Everyday decision-making in dementia:findings from a longitudinal interview study of people with dementia and family carers. International psychogeriatrics, 25(06), 949-961. Sammendrag:Background: Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored. Methods: Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts. Results: Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decisionmaking, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers' active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this. Conclusions: Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decisionmaking, and be mindful how abilities may change. Omsorgsbiblioteket har ikke tilgang til å publisere dette dokumentet i fulltekst. Kanskje ditt lokale bibliotek kan hjelpe deg, eller kanskje du kommer videre med lenken nedenfor.

There is still little empirical research observing the process of diagnostic disclosure in dementia. Studies exploring the views of patients and their families suggest this should be an ongoing process with the provision of support and information tailored to individual needs. The term "Alzheimer's disease" appears to have more negative connotations than the word "dementia".

The quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.

Service providers should review the process of assessment and diagnosis disclosure for people with cognitive impairment and their carers. They should develop a process that is person centred and accommodates the individualised preferences. The development of service systems to provide continuous relevant information and clarity to service users needs to involve all stakeholders, including people with cognitive impairment and their carers.