Living well with dementia: enhancing dignity and quality of life, using a novel intervention, Dignity Therapy.

AIMS AND OBJECTIVES: To assess the feasibility, acceptability and potential effectiveness of Dignity Therapy to improve the quality of life and reduce psychological and spiritual distress in older people with early stage dementia. BACKGROUND: Dementia is a syndrome with several causes that leads to a progressive decline in multiple areas of functioning. The maintenance of dignity and enhancement of quality of life are key elements of care. Meaningful communication may become more difficult with condition progression. Improvements in communication may have positive effects on the person's quality of life. Dignity Therapy is a short psychotherapeutic intervention that uses a trained therapist to take the person with dementia through a guided interview process, producing a 'generativity' document that creates a lasting, written legacy during a time when they are still able to communicate well. DESIGN AND METHOD: This was a feasibility mixed method study. Dignity Therapy was undertaken with patients diagnosed as having early stage dementia. Data were gathe-red from pre- and post-Dignity Therapy interviews, a focus group, interviews with key stakeholders, and three outcome measures: The Herth Hope Index; The Patient Dignity Inventory; Perceived Quality of Life/Satisfaction with Quality Life Ratings. FINDINGS: This study demonstrated that Dignity Therapy is feasible, acceptable and potentially effective for older people with dementia. Three overarching themes emerged: A life in context, A key to connect and Personal legacy. CONCLUSIONS: We recommend that this feasibility study forms the basis for further study, advocating the prospective benefits to patients with dementia, families and nursing practice. IMPLICATIONS FOR PRACTICE: Dignity Therapy, as a psychosocial intervention, has the potential to improve the quality of life and enhance person centred care for people with dementia.

Mild cognitive impairment and deficits in instrumental activities of daily living: a systematic review.

INTRODUCTION: There is a growing body of evidence that subtle deficits in instrumental activities of daily living (IADL) may be present in mild cognitive impairment (MCI). However, it is not clear if there are IADL domains that are consistently affected across patients with MCI. In this systematic review, therefore, we aimed to summarize research results regarding the performance of MCI patients in specific IADL (sub)domains compared with persons who are cognitively normal and/or patients with dementia. METHODS: The databases PsycINFO, PubMed and Web of Science were searched for relevant literature in December 2013. Publications from 1999 onward were considered for inclusion. Altogether, 497 articles were retrieved. Reference lists of selected articles were searched for potentially relevant articles. After screening the abstracts of these 497 articles, 37 articles were included in this review. RESULTS: In 35 studies, IADL deficits (such as problems with medication intake, telephone use, keeping appointments, finding things at home and using everyday technology) were documented in patients with MCI. Financial capacity in patients with MCI was affected in the majority of studies. Effect sizes for group differences between patients with MCI and healthy controls were predominantly moderate to large. Performance-based instruments showed slight advantages (in terms of effect sizes) in detecting group differences in IADL functioning between patients with MCI, patients with Alzheimer's disease and healthy controls. CONCLUSION: IADL requiring higher neuropsychological functioning seem to be most severely affected in patients with MCI. A reliable identification of such deficits is necessary, as patients with MCI with IADL deficits seem to have a higher risk of converting to dementia than patients with MCI without IADL deficits. The use of assessment tools specifically designed and validated for patients with MCI is therefore strongly recommended. Furthermore, the development of performance-based assessment instruments should be intensified, as they allow a valid and reliable assessment of subtle IADL deficits in MCI, even if a proxy is not available. Another important point to consider when designing new scales is the inclusion of technology-associated IADL. Novel instruments for clinical practice should be time-efficient and easy to administer.

Prediction of general hospital admission in people with dementia: cohort study.

BACKGROUND: People with dementia are extremely vulnerable in hospital and unscheduled admissions should be avoided if possible. AIMS: To identify any predictors of general hospital admission in people with dementia in a well-characterised national prospective cohort study. METHOD: A cohort of 730 persons with dementia was drawn from the Scottish Dementia Research Interest Register (47.8% female; mean age 76.3 years, s.d. = 8.2, range 50-94), with a mean follow-up period of 1.2 years. RESULTS: In the age- and gender-adjusted multivariable model (n = 681; 251 admitted), Neuropsychiatric Inventory score (hazard ratio per s.d. disadvantage 1.21, 95% CI 1.08-1.36) was identified as an independent predictor of admission to hospital. CONCLUSIONS: Neuropsychiatric symptoms in dementia, measured using the Neuropsychiatric Inventory, predict non-psychiatric hospital admission of people with dementia. Further studies are merited to test whether interventions to reduce such symptoms might reduce unscheduled admissions to acute hospitals.

Dementia research--what do different public groups want? A survey by the Scottish Dementia Clinical Research Network.

Scotland's National Dementia Strategy calls for people with dementia and their carers to give voice to what they see as the priorities for dementia research. We sent questionnaires on dementia research priorities, locus and type of research, desired outcome measures and willingness to volunteer, to two groups of dementia research stakeholders: (1) people with dementia and their carers who may or may not be participating in research and (2) those who are directly participating in research. We also made the questionnaire available on a national dementia research website. Five hundred and fourteen responses were received. The top four topics rated by importance were identical across all three groups of respondents: early detection (38.1%), drug trials (14.2%), studies on people living at home (9.7%) and study of carers (6.0%). The data can help shape the dementia research agenda, but more information needs to be made available to the public about other potential research areas.

What motivates patients and carers to participate in dementia studies?

AIM: The aim of this study was to explore what motivates people to participate in dementia research. METHOD: Three focus groups, attended by carers and people with dementia who had already volunteered to take part in dementia research, were used to explore motivation. Their thoughts and feelings about brain tissue donation were also explored. An adaptation of the participation chain model was used. A fourth focus group was given a supplementary questionnaire examining use of resources. Focus group content was analysed using a content analysis approach to identify themes. FINDINGS: Individualistic motivations included increased confidence and a chance to have a say. Collectivistic motivations included 'helping through being part of something bigger'. Mobilisation (catalysing) issues included a desire for change, and 'being asked'. In response to the questionnaire participants identified that they would have taken part regardless of any tangible benefits, with all saying that they would not have been put off by any of the costs. CONCLUSION: Participants in these focus groups were keen to be involved in dementia research and discounted any potential costs to themselves. They highlighted that being asked was an important factor in engaging them in dementia research.

Does the Addenbrooke's Cognitive Examination-revised add to the Mini-Mental State Examination in established Alzheimer disease? Results from a national dementia research register.

OBJECTIVE: To evaluate how much the Addenbrooke's Cognitive Examination-revised (ACE-R) improves the estimate of cognitive ability from the Mini-Mental State Examination (MMSE) in people with Alzheimer disease (AD). METHODS: We examined itemized data in people with AD who were on the Scottish Dementia Research Interest Register drawn from eight centres across Scotland, covering 75% of the Scottish population. ACE-R items that comprise the MMSE and those that did not (non-MMSE items) were summed separately. We residualized MMSE total on non-MMSE total and vice versa to derive a measure of the variance unique to each. RESULTS: Five hundred and one (258 male, 243 female) participants, mean age 75.7 (range 52-94) years were on the register, of whom 329 (160 men, 169 women) had AD. Of those with AD, 309 had a mean MMSE of 20.5 and mean ACE-R of 57.5 measured with Pearson r = 0.92 between MMSE and ACE-R totals, and the regression equation ACE-R score = 3.0 × MMSE - 4.1. The unique non-MMSE items score correlated with ACE-R total r = 0.40 (16% of ACE-R variance). CONCLUSIONS: The ACE-R and MMSE total scores are highly correlated. In this clinical sample of people with established AD, for an MMSE score of 24, the predicted ACE-R score was 67.9 with 95% confidence intervals of 61.6-75.4. The extra non-MMSE ACE-R items improve estimates of cognitive ability by 16%.

Fifteen year comparison of antipsychotic use in people with dementia within hospital and nursing home settings: sequential cross-sectional study.

OBJECTIVE: The use of antipsychotics to treat people with behavioural and psychological symptoms associated with dementia is controversial, especially in long-stay settings. We assessed the relationship between behaviour, function and antipsychotic use in people with dementia in a long-stay psychiatric unit and designated elderly mentally ill (EMI) nursing homes over a 15-year period. METHOD: Sequential cross-sectional studies assessing twelve behaviours and seven measures of function for each patient. Antipsychotic and antidepressant use was obtained from current prescription records. RESULTS: Regular antipsychotic use in hospital fell between 1990 and 1998. In 1998 use in nursing homes was significantly greater than in hospital, and increased between 1998 and 2005. Noisiness/verbal aggression (NVA) was the only behaviour more commonly associated with regular antipsychotic use over that timescale. Those with low levels of core symptoms (p = 0.021) and high dependency patients (p = 0.001) were more likely to be receiving regular antipsychotics in nursing homes than in hospital. Depression was not treated well even when identified. CONCLUSION: Compared to a long-stay hospital setting, antipsychotic drug use for people with dementia in nursing homes has risen and become less systematic. This cannot be explained by increasing core behaviour symptoms or differences in physical dependency.

Delirium and dementia in acute hospitals: assessing the impact of RMN input.

There is evidence that provision for the mental health needs of older people in acute hospitals is generally poor. This article describes a study undertaken over a nine-month period at Perth Royal Infirmary, a 317-bed district general hospital. The study sought to measure the impact of input from an RMN in an acute hospital setting and within a multidisciplinary liaison model. The article examines the implications, preparation, implementation and evaluation of RMN input, and the baseline knowledge and expectations of acute hospital staff when caring for patients with dementia and delirium.

Association of a salivary acetylcholinesterase with Alzheimer's disease and response to cholinesterase inhibitors.

OBJECTIVES: A decrease in cholinergic activity is a key event in the biochemistry of Alzheimer's disease (AD). The aim of the study was to investigate the expression levels of markers of cholinergic function in saliva, which is a readily accessible body fluid that can be obtained from subjects with minimal distress. DESIGN AND METHODS: Salivary samples were obtained from people with NINCDS-ARDRA "probable" Alzheimer's disease and age- and sex-matched controls. Salivary acetylcholinesterase enzyme (AChE) activity was determined colorometrically. RESULTS: Robust AChE catalytic activity was detected in the saliva samples that was stable for up to 6 h at room temperature following the provision of the salivary sample. The activity of the enzyme was significantly lower in people with AD than in age-matched controls. In addition, there were significant differences in activity between those who responded to acetylcholinesterase inhibitor (AChE-I) therapy and those who did not. CONCLUSIONS: Salivary enzyme activity may therefore prove to be a useful marker of central cholinergic activity.