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Over 400,000 people live in care home settings in the UK. One way of understanding and improving the quality of care provided is by measuring and understanding the quality of life (QoL) of those living in care homes. This review aimed to identify and examine the psychometric properties including feasibility of use of dementia-specific QoL measures developed or validated for use in care settings.
Instruments were identified using four electronic databases (PubMed, PsycINFO, Web of Science, and CINAHL) and lateral search techniques. Searches were conducted in January 2017. Studies which reported on the development and/or validation of dementia specific QoL instruments for use in care settings written in English were eligible for inclusion. The methodological quality of the studies was assessed using the COSMIN checklist. Feasibility was assessed using a checklist developed specifically for the review.
Six hundred and sixteen articles were identified in the initial search. After de-duplication, screening and further lateral searches were performed, 25 studies reporting on 9 dementia-specific QoL instruments for use in care home settings were included in the review. Limited evidence was available on the psychometric properties of many instruments identified. Higher-quality instruments were not easily accessible or had low feasibility of use.
Few high-quality instruments of QoL validated for use in care home settings are readily or freely available. This review highlights the need to develop a well-validated measure of QoL for use within care homes that is also feasible and accessible.
There is a need to improve dementia education to prepare future generations of healthcare professionals to deal with the increasing challenges they will face. Time for Dementia is an innovative undergraduate education program for medical, nursing, and paramedic students in the south of England. Success of the program is dependent upon the participation of families (people with dementia and their carers). This qualitative study seeks to explore the motivation and experiences of the families taking part in the program.
A topic guide was developed to understand factors influencing motivation and retention. A purposeful sample of participant families, who had at least 12 months of involvement in the program, were selected from a cohort of 282 families and were invited to take part in an in-depth qualitative interview. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. This was subsequently refined in an on-going process of analysis aided by the use of Nvivo 11. Interviewing stopped when thematic saturation was reached.
Eighteen families took part in an in-depth qualitative interviews. Four themes were identified from the analysis. These themes were motivators, value to family, value to the person with dementia, and student factors.
This study identifies underpinning factors that motivate families to join dementia education programs and the impact of such programs upon them. We found that engagement in such programs can have therapeutic benefits to participants, and do not cause harm. These findings can be used to strengthen recruitment and enhance family involvement in similar programs.
One common finding in analyses of health systems with respect to dementia is that there is a “diagnosis gap” in dementia with less than a half of those with dementia ever attracting a diagnosis of dementia. The service response to this has been to develop memory clinics and other services to enable good quality diagnosis of the syndrome of dementia and its sub-types.
This narrative review considers who memory assessment services are for and what they should aim to achieve. We will consider the evidence base and discuss “what good looks like.”
The sparsity of the evidence base for the provision of memory services is striking. There is a lack of studies that have evaluated the absolute and relative impact of different models of diagnostic services or the impact of diagnosis and stage of illness at diagnosis.
There remains genuine uncertainly about: the positive and negative impacts of receiving the diagnosis of dementia; the effects of receiving the diagnosis of dementia at an earlier or later stage; and how best to provide memory assessment services in terms of clinical and cost-effectiveness. We need applied health research designed to fill these important evidence gaps, resolving uncertainty, and allowing the development and delivery of efficient and effective services and policy to enable people to live well with dementia. The methodology that will be needed will be a challenge since, due to ethical and practical considerations, it is likely to have to be observational rather than experimental.
Agitation is common across neuropsychiatric disorders and contributes to disability, institutionalization, and diminished quality of life for patients and their caregivers. There is no consensus definition of agitation and no widespread agreement on what elements should be included in the syndrome. The International Psychogeriatric Association formed an Agitation Definition Work Group (ADWG) to develop a provisional consensus definition of agitation in patients with cognitive disorders that can be applied in epidemiologic, non-interventional clinical, pharmacologic, non-pharmacologic interventional, and neurobiological studies. A consensus definition will facilitate communication and cross-study comparison and may have regulatory applications in drug development programs.
The ADWG developed a transparent process using a combination of electronic, face-to-face, and survey-based strategies to develop a consensus based on agreement of a majority of participants. Nine-hundred twenty-eight respondents participated in the different phases of the process.
Agitation was defined broadly as: (1) occurring in patients with a cognitive impairment or dementia syndrome; (2) exhibiting behavior consistent with emotional distress; (3) manifesting excessive motor activity, verbal aggression, or physical aggression; and (4) evidencing behaviors that cause excess disability and are not solely attributable to another disorder (psychiatric, medical, or substance-related). A majority of the respondents rated all surveyed elements of the definition as “strongly agree” or “somewhat agree” (68–88% across elements). A majority of the respondents agreed that the definition is appropriate for clinical and research applications.
A provisional consensus definition of agitation has been developed. This definition can be used to advance interventional and non-interventional research of agitation in patients with cognitive impairment.
Depression is a common and costly comorbidity in dementia. There are very few data on the cost-effectiveness of antidepressants for depression in dementia and their effects on carer outcomes.
To evaluate the cost-effectiveness of sertraline and mirtazapine compared with placebo for depression in dementia.
A pragmatic, multicentre, randomised placebo-controlled trial with a parallel cost-effectiveness analysis (trial registration: ISRCTN88882979 and EudraCT 2006-000105-38). The primary cost-effectiveness analysis compared differences in treatment costs for patients receiving sertraline, mirtazapine or placebo with differences in effectiveness measured by the primary outcome, total Cornell Scale for Depression in Dementia (CSDD) score, over two time periods: 0–13 weeks and 0–39 weeks. The secondary evaluation was a cost-utility analysis using quality-adjusted life years (QALYs) computed from the Euro-Qual (EQ-5D) and societal weights over those same periods.
There were 339 participants randomised and 326 with costs data (111 placebo, 107 sertraline, 108 mirtazapine). For the primary outcome, decrease in depression, mirtazapine and sertraline were not cost-effective compared with placebo. However, examining secondary outcomes, the time spent by unpaid carers caring for participants in the mirtazapine group was almost half that for patients receiving placebo (6.74 v. 12.27 hours per week) or sertraline (6.74 v. 12.32 hours per week). Informal care costs over 39 weeks were £1510 and £1522 less for the mirtazapine group compared with placebo and sertraline respectively.
In terms of reducing depression, mirtazapine and sertraline were not cost-effective for treating depression in dementia. However, mirtazapine does appear likely to have been cost-effective if costing includes the impact on unpaid carers and with quality of life included in the outcome. Unpaid (family) carer costs were lower with mirtazapine than sertraline or placebo. This may have been mediated via the putative ability of mirtazapine to ameliorate sleep disturbances and anxiety. Given the priority and the potential value of supporting family carers of people with dementia, further research is warranted to investigate the potential of mirtazapine to help with behavioural and psychological symptoms in dementia and in supporting carers.
Should you intervene in the life of the 48-year-old woman whose dwelling is stuffed with accumulated rubbish and who will not let anyone help get rid of it – or the 78-year-old surrounded by putrescent food and filth – or the 'animal accumulator'? Cases of severe domestic squalor (sometimes called Diogenes Syndrome) are among the most complex and difficult faced by community agencies. Local councils, housing officers, health professionals, social services, animal welfare agencies, public guardians and of course relatives and neighbours often feel powerless and lack confidence about what to do when faced with such situations. The guidelines, recommendations and case examples in Severe Domestic Squalor will help concerned people to understand what can be done and how, by providing an understanding of the causative factors and who should take the lead in dealing with them.
Up to a quarter of people in the UK with a diagnosis of dementia are
prescribed an antipsychotic in any year. The potential risks of such
treatment are becoming clearer, but the benefits remain uncertain.
Concern about the frequency and quality of such prescribing was expressed
in the National Dementia Strategy for England in 2009.
To provide an estimate of the prevalence of antipsychotic use for
dementia in secondary mental health services in the UK and to collect
data relevant to quality improvement initiatives for such prescribing
In the context of a UK quality improvement programme, relevant clinical
audit data were collected for patients with dementia under the care of
specialist older people's mental health services.
Fifty-four mental health National Health Service (NHS) trusts submitted
data on 10 199 patients. Of those patients without comorbid psychotic
illness, 1620 (16%) were prescribed an antipsychotic; the common clinical
indications for such medication were agitation, psychotic symptoms,
aggression and distress. Multivariable regression found younger age, care
home or in-patient setting, vascular or Parkinson's disease dementia and
greater severity of dementia to be all significantly associated with
being prescribed antipsychotic medication. Of the 1001 (62%) patients
prescribed treatment for more than 6 months, only three-quarters had a
documented review of therapeutic response in the previous 6 months.
The data reveal areas of relatively good current practice, including
consideration of alternatives to antipsychotic medication and clear
documentation of target symptoms. They also suggest areas for
improvement, such as the frequency and quality of review of long-term
medication. Strategies to reduce antipsychotic use should take account of
the demographic and clinical variables predicting increased likelihood of