The last phase of life with dementia in Swiss nursing homes: the study protocol of the longitudinal and prospective ZULIDAD study.

BACKGROUND: The proportion of older people with advanced dementia who will die in nursing homes is constantly growing. However, little is known about the dying phase, the type of symptoms, the management of symptoms and the quality of life and dying in people with advanced dementia. The ZULIDAD (Zurich Life and Death with Advanced Dementia) study aims at extending the current scientific knowledge by providing first data from Switzerland. METHODS: The ZULIDAD study employs a prospective design to study nursing home residents with advanced dementia for three years or until their death in eleven nursing homes in Zurich. Observational data from quarterly questionnaires for relatives and primary nurses is combined with data from the Resident Assessment Instrument - Minimum Data Set (RAI-MDS). Special focus is put on 1) the cross-sectional analysis of baseline and post-mortem data regarding quality of life and quality of dying and how the perceptions of these measures differ between relatives and primary nurses, 2) the longitudinal analyses of established health outcome measures (e.g., EOLD, MSSE, BISAD, QUALID) in order to understand their trajectories and 3) international comparisons of cross-sectional and longitudinal data. DISCUSSION: The ZULIDAD study is one of the few existing prospective studies on end-of-life care in dementia and it is the first prospective study to describe the situation in Switzerland. Its multi-perspective approach allows a comprehensive approximation to central health outcome measures at the end of life such as pain, suffering or quality of life. Providing insights into the current provision of care, it can serve as a basis for improving dementia end-of-life care in Switzerland and internationally.

[Domestic Violence in Old Age: Prevention and Intervention]. / Häusliche Gewalt im Alter: Prävention und Intervention.

Domestic Violence in Old Age: Prevention and Intervention Abstract. Abuse of the eldery occurs frequently. It is experienced most often as psychological abuse (20 %), less often as financial exploitation (4 %) or physical abuse (3 %). The most important risk factor for the elderly is dependence on regular help, especially because of dementia. Caregivers are at a high risk for abuse if they are psychologically conspicuous, live with the dependent or are financially dependent from them. Additional risks are social isolation, unsolved conflicts and a history of domestic violence. The most important intervention on the caregiver's side is the organization of ambulant care servies, and on the victim's side the treatment of nocturnal agitation ("sundowning") with antidepressant of phytopharmaceutical medication, thus avoiding benzodiazepines and neuroleptics.

[Results of the Qualitative Evaluation of all-fit--a group education and training program for elderly people with chronic illness]. / Resultate der qualitativen Evaluation von allfit--einem Schulungs- und Bewegungsprogramm für chronischkranke ältere Menschen: Die Wirkungsweise aus der Sicht von Teilnehmenden an Diabetes- oder Rheumakursen.

Chronic illness in elderly people is often associated with activity limitations, impairment, and mood changes. There is strong evidence that chronic disease self-management programs enhance health behaviour and stabilize or improve health status. A new program in Zurich, called all-fit, is a community-based program consisting of eight educational group sessions and physical training, held over two months. It is designed for elders with chronic illness. The program is led by a specially trained nurse. This study was undertaken to evaluate the program. The qualitative methodology emphasizes the experiences of the participants. Sixteen participants, drawn from the diabetes and arthritis groups, engaged in in-depth interviews before and after their participation in the program. The aim of the study was to assess the outcomes of the program and to identify the ways by which the outcomes occurred. Interview data were analyzed by content analysis. Most participants reported several positive outcomes and described dynamic pathways that led to these outcomes. In analyzing the pathways, the following steps emerged: (1) Motivation to change stems from, for example, activities such as sharing vicarious experiences within the group, or taking on other participants or significant events during the sessions as exemplars. (2) To move on, certain intermediate steps are important, such as cognitive reframing and experimenting with the new behaviour. (3) The resulting change can be attributed to two domains: (a) behaviour change in self-management, such as more time spent exercising or eating healthy; and (b) improvement in psychological well-being, such as having less feelings of depression or new perspectives for future coping. (4) Factors such as remembering highlights and additional group activities contribute to the sustainability of the effects. The results demonstrate that all-fit can be considered as a self-management program that improves health behaviour and physical and psychological well-being. There is a significant dynamic underway which is facilitated by the group setting with participants with similar conditions, social interactions, and concrete, practical learning.

Types of abuse and risk factors associated with elder abuse.

PRINCIPLES: Detecting elder abuse is challenging because it is a taboo, and many cases remain unreported. This study aimed to identify types of elder abuse and to investigate its associated risk factors. METHODS: Retrospective analyses of 903 dossiers created at an Independent Complaints Authority for Old Age in the Canton of Zurich, Switzerland, from January 1, 2008 to October 31, 2012. Characteristics of victims and perpetrators, types of abuse, and associated risk factors related to the victim or the perpetrator were assessed. Bi- and multivariate analysis were used to identify abuse and neglect determinants. RESULTS: A total of 150 cases reflected at least one form of elder abuse or neglect; 104 cases were categorised as abuse with at least one type of abuse (overall 135 mentions), 46 cases were categorised as neglect (active or passive). Psychological abuse was the most reported form (47%), followed by financial (35%), physical (30%) and anticonstitutional abuse (18%). In 81% of the 150 cases at least two risk factors existed. In 13% no associated risk factor could be identified. Compared with neglect, elders with abuse were less likely to be a nursing home resident than living at home (odds ratio [OR] 0.02, 95% confidence interval [CI] 0.00-0.19). In addition, they were more likely to be cohabiting with their perpetrators (OR 18.01, 95% CI 4.43-73.19). CONCLUSION: For the majority of the reported elder abuse cases at least two associated risk factors could be identified. Knowledge about these red flags and a multifaceted strategy are needed to identify and prevent elder abuse.

Molecular study of the hydroxymethylbilane synthase gene (HMBS) among Polish patients with acute intermittent porphyria.

Acute intermittent porphyria (AIP), an autosomal dominant disorder of heme biosynthesis, is due to mutations in hydroxymethylbilane synthase (HMBS; or porphobilinogen deaminase, PBGD) gene. In this study, we analyzed 20 Polish patients affected by AIP and we were able to characterize seven novel mutations. A nonsense mutation (Y46X), two frameshift mutations (315delT and 552delT) and a 131bp deletion (nucleotides 992-1123) give rise to truncated proteins. A donor splice site mutation IVS12+2T>C predicts skipping of exon 12. A missense mutation (D61Y) was identified in two apparently unrelated patients with a clearly clinical indication of AIP. An inframe 3-bp deletion (278-280delTTG) results in the removal of V93 from the enzyme. In addition to the novel mutations, nine previously described HMBS gene mutations-R26H, G111R, IVS7+1G>A, R149X, R173Q, 730-731delCT, R225X, 982-983delCA and G335D-were identified in this cohort. Our results demonstrate that molecular analysis of the PBGD gene is a more reliable method comparing to enzymatic assay in the diagnosis of AIP. Although more than 170 different mutations are known to the HMBS gene so far, over 40% of all mutations identified among the Polish AIP patients of this study are novel mutations, indicating the heterogeneity of molecular defects causing AIP.

[Suicidality due to inability to pay for care despite home ownership]. / Verwahrloste Witwe in Eigentumswohnung mit Geldsorgen und Suizidgedanken. Ein geriatrischer Hausbesuch.

A 78-year old-widow lives squalidly in her own apartment. The examination of her cognitive functions reveals a moderate dementia. The needed home care service can not be financed by her small income. By increase of her mortgage a life annuity can be acquired to guaranty regular payment of her interests. This decreases her revenue below the threshold for federal additions to social security rent. This enables to improve the financial health of the demented person and makes regular home care services possible.

The impact of attachment on dementia-related problem behavior and spousal caregivers' well-being.

This study investigated the impact of attachment style on the course of dementia-related problem behavior and caregivers' well-being over 2 years. A total of 116 married couples with one spouse suffering from dementia participated. Care recipients' and caregivers' attachment styles were assessed at the beginning of the study. Caregivers' well-being and care recipients' dementia-related problem behavior were assessed three times (n = 68). Husbands' and wives' attachment styles were significantly associated. Caregivers' avoidance and care recipients' insecure attachment style were associated with increased levels of dementia-related problem behavior. Caregivers' avoidance and anxiety were also associated with lower levels of caregivers' well-being. The latent growth curve analysis indicated that problem behavior and attachment style are associated, and that both have direct effects on caregivers' well-being.

Caring for relatives with dementia: willingness-to-pay for a reduction in caregiver's burden.

Informal care constitutes a large percentage of total care for patients with dementia. Providing care for cognitively impaired individuals is stressful and demanding. This study applies the contingent valuation method to estimate the willingness-to-pay of informal caregivers for a reduction of their burden. In 109 face-to-face interviews, caregivers with demented relatives stated their willingness-to-pay for three hypothetical treatments of the patient. Results suggest that caregiver's disutility from burden is considerable. On average, caregivers are willing to pay 2200 Swiss Francs (US$1500) per year for a reduction of their burden level from moderate to low. Therefore, interventions which combat the negative consequences of caregiving have great potential to yield a social net benefit.

Who participates in psychosocial interventions for caregivers of patients with dementia?

OBJECTIVE: The purpose of the present study is to evaluate if the participants in psychosocial interventions for dementia caregivers are representative of the whole population of dementia patients or if some socioeconomic groups are over- or underrepresented. DESIGN: The demographic and socioeconomic characteristics of the 128 participants of a randomized controlled study on the effects of caregiver education were compared with those of all the elderly residents of the City of Zurich (n = 64,856, elderly group), of all demented patients entering a City of Zurich nursing home in a 6-month period (n = 218, NH entry group) and of all demented inhabitants evaluated during a 20-month follow-up at a community memory clinic (n = 187, memory group). METHODS: Data on income and wealth were derived from official tax records. The characteristics of the different groups were compared by chi2 or t tests. RESULTS: As expected in a study on caregiver education, the demented patients were younger, more often male and married than all other study groups (p < 0.01). The participants in the psychosocial intervention had significantly (p < 0.01) higher education than all other groups; this effect is caused in part by the higher proportion of males. The NH entry group was less well educated than the elderly group (p < 0.05). The intervention group had a higher income and was wealthier than the three other groups (p < 0.01), but there was no significant difference with respect to the wealth of the memory group. The 25% poorest of the elderly group made up only about 10% of the participants in the intervention group. However, the 25% richest of the elderly group made up 42% of the intervention group. The method of recruitment for the psychosocial intervention (by media, referral of physicians and by a memory clinic) was not significantly related to any of the demographic or socioeconomic parameters. CONCLUSION: The lower socioeconomic strata are clearly underrepresented in psychosocial interventions.