How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care?

OBJECTIVES: To examine the experiences of spousal care givers of Alzheimer patients to disclosure of dementia diagnosis and subsequent care. METHODS: A random sample of 1943 spousal care givers of people receiving medication for Alzheimer disease (AD) was sent a cross-sectional postal survey about their opinions on the disclosure of dementia and follow-up care. A smaller qualitative study (n = 63) included open-ended questions concerning their experiences of the same topics. RESULTS: The response rate for the survey was 77%. Of the respondents, 1214 of 1434 acknowledged themselves as their spouse's care giver. The mean age of the care givers was 78.2 years, and that of demented spouses, 80.5 years. Of the care givers, 63% were women. The couples had long-lasting marriages (mean 52 years). Of the care givers, 93% reported that dementia had been disclosed openly to their spouse; 97% also preferred that physicians openly inform the patients of the dementia diagnosis, although 55% of their spouses with AD had developed depressive symptoms after the disclosure. Of the care givers, 71% felt they had received sufficient information about dementia. However, only 50% estimated that their spouses' follow-up care had been well organised. The responses in the qualitative study indicated that many care givers felt grief and anxiety. They also expressed feelings of loneliness and uncertainty about how to deal with follow-up care for dementia. CONCLUSIONS: Elderly spousal care givers were quite satisfied with the information given them about dementia. However, the support with regard to the follow-up care of care-giving families failed to meet their needs adequately.

Nutritional Guidance Improves Nutrient Intake and Quality of Life, and May Prevent Falls in Aged Persons with Alzheimer Disease Living with a Spouse (NuAD Trial).

OBJECTIVE: The aim was to examine the effect of tailored nutritional guidance on nutrition, health-related quality of life (HRQoL) and falls in persons with Alzheimer disease (AD). DESIGN: Randomised controlled trial. SETTING AND PARTICIPANTS: Persons with AD living with a spouse. INTERVENTION: Tailored nutritional guidance with home visits during one year. The control group received a written guide about nutrition in older adults and all community-provided normal care. MEASUREMENTS: The primary outcome measure was weight change, and secondary outcomes included changes in protein and micronutrient intakes from three-day food records, HRQoL (15D) and rate of falls. RESULTS: Of the participants (n = 78) with AD (mean age 77.4, 69% males), 40% were at risk for malnutrition, 77% received < 1.2 g/bodyweight (kg) of protein at baseline. We found no difference in weight change between the groups. At 12 months, the mean change in protein intake was 0.05 g/bodyweight (kg) (95% CI -0.06 to 0.15) in the intervention group (IG), and -0.06 g/kg (95% CI -0.12 to 0.02) in the control group (CG) (p = 0.031, adjusted for baseline value, age, sex, MMSE and BMI). Participants' HRQoL improved by 0.006 (95% CI -0.016 to 0.028) in the IG, but declined by -0.036 (95% CI -0.059 to 0.013) in the CG (p = 0.007, adjusted for baseline value, age, sex, MMSE and BMI). Dimensions that differed included mental functioning, breathing, usual activities and depression. The fall rate was 0.55 falls/person per year (95% CI 0.34 to 0.83) in the IG, and 1.39 falls/person per year (95% CI 1.04 to 1.82) in the CG (IRR 0.55; 95% CI 2.16 to 6.46; p < 0.001 adjusted for age, sex and MMSE). CONCLUSIONS: Tailored nutritional guidance improves nutrition and HRQoL, and may prevent falls among AD people living with a spouse.

Effects of supporting community-living demented patients and their caregivers: a randomized trial.

OBJECTIVES: To determine whether community care of demented patients can be prolonged by means of a 2-year support program based on nurse case management. DESIGN: Randomized controlled intervention study with 2-year follow-up. SETTING: Demented patients entitled to payments from the Social Insurance Institution for community care, in five municipalities in eastern Finland. PARTICIPANTS: One hundred demented patients, age 65 and older, living at home with the primary support of informal caregivers, allocated at random to the intervention (n = 53) or control group (n = 47). INTERVENTION: Intervention patients and their caregivers were provided with a 2-year intervention program of systematic, comprehensive support by a dementia family care coordinator. MEASUREMENTS: Time to institutionalization (period in community care) from enrollment of patients in the study to their placement in long-term institutional care. RESULTS: During the first months, the rate of institutionalization was significantly lower in the intervention group than in the control group (P = .042), but the benefit of the intervention decreased with time (P = .028). Estimated probability of staying in community care up to 6, 12, and 24 months was 0.98, 0.92, and 0.63 in the intervention group and 0.91, 0.81, and 0.68 in the control group, respectively. Results also suggest that the intervention used in the study might be especially beneficial to patients with severe dementia and those with problems threatening the continuity of community care. CONCLUSIONS: The placement of demented patients in long-term institutional care can be deferred with the support of a dementia family care coordinator. However, by the end of the 2-year intervention, the number of patients institutionalized was similar in the intervention and control group. It seems to be beneficial to direct this type of intensive support at severely demented patients and their caregivers. On the basis of our experiences, we suggest that intervention by a dementia family care coordinator should be targeted especially at patients with problems threatening the continuity of community care.

Caregivers' male gender is associated with poor nutrient intake in AD families (NuAD-trial).

OBJECTIVE: Alzheimer patients (AD) are known to be at risk for malnutrition and their older spouses may also have nutritional problems. The aim of our study was to clarify the association of caregivers' sex on the nutrient intake of AD couples. SETTING: Our study uses the baseline data of a randomized nutritional trial exploring the effectiveness of nutrition intervention among home-dwelling AD patients. PARTICIPANTS: The central AD register in Finland was used to recruit AD patients living with a spousal caregiver, 99 couples participated in our study. MEASUREMENTS: Nutritional status was assessed using the Mini-Nutritional Assessment (MNA). Nutrient intakes for both AD patients and their spouses were calculated from 3-day food diaries. RESULTS: The mean age of caregivers and AD spouses was 75.2 (SD 7.0) and 77.4 years (SD 5.6), respectively. According to the MNA, 40% of male and 52% of female AD spouses were at risk for malnutrition. Among male caregivers, the mean energy and protein intakes were 1605 kcal (SD 458) and 0.93 g/body kg (SD 0.30), whereas the respective figures for their female AD spouses were 1313 kcal (SD 340) and 0.86 g/body kg (SD 0.32), respectively. Among female caregivers, the mean energy and protein intakes were 1536 kcal (SD 402) and 1.00 g/body kg (SD 0.30), whereas the respective figures for their male AD spouses were 1897 kcal (SD 416) and 1.04 g/body kg (SD 0.30). The interaction between male caregiver sex and lower energy (p<0.001) and lower protein intake (p=0.0048) (adjusted for age and MMSE) was significant. Similar differences between caregiver sexes were observed with the intake of various nutrients. CONCLUSIONS: A gender difference exists in the ability to cope with caregiver responsibilities related to nutrition. A need exists for tailored nutritional guidance among older individuals and especially among male caregivers.

Dementia with Lewy bodies according to the consensus criteria in a general population aged 75 years or older.

OBJECTIVE: To estimate the prevalence of dementia with Lewy bodies (DLB) according to the consensus criteria in a general population aged 75 years or older. METHODS: The "Kuopio 75+ study" is a population based health survey focused on the clinical epidemiology of dementia and functional capacity among elderly subjects aged 75 years or older. On 1 January 1998, a random sample of 700 subjects was drawn from a total population born before 1 January 1923, living in the city of Kuopio, northeast Finland (n = 4518). The study subjects underwent a structured interview and clinical examination. RESULTS: 601 elderly subjects (86% of the random sample) were examined. A dementia disorder was diagnosed in 137-a prevalence of 22.8% (95% confidence interval 19.4% to 26.2%). The prevalence of DLB was 5.0% (3.2% to 6.7%), comprising 22% of all demented subjects. Probable DLB was diagnosed in 20 subjects (3.3% (1.9% to 4.8%)), and possible DLB in 10 (1.7% (0.6% to 2.7%)). The prevalence of Alzheimer's disease was 10.6% (47% of all demented subjects), of vascular dementia, 5.3% (23%), and of other types of dementing disorders, 1.8% (8%). CONCLUSIONS: In a general population aged 75 years and older, the prevalence of a disorder fulfilling the diagnostic criteria of DLB is half that of Alzheimer's disease and the same as for vascular dementia.

Systematic intervention for supporting community care of elderly people after a delirium episode.

OBJECTIVE: To investigate the effects of a systematic intervention with a case manager concept and rehabilitation periods compared to standard aftercare in elderly community-dwelling patients discharged from the hospital after a delirium episode. DESIGN: Before/after intervention cohort study with 3-year follow-up. SETTINGS: Acute geriatric wards of a city hospital and a private rehabilitation center. SUBJECTS AND METHODS: The intervention group consisted of 51 community-dwelling people over 65 years of age without severe underlying disorders, who were consequently admitted as emergency cases to the hospital because of a delirious state or who were delirious immediately after admission. The intervention included continuous support and counseling by a nurse specialist and rehabilitation periods at a rehabilitation center. The control group consisted of 51 age- and gender-matched patients admitted to the same hospital for delirium fulfilling the same inclusion and exclusion criteria during preceding years. The main outcome measures were duration of community care, the use of long-term institutional care, the use of short-term hospitalizations during the follow-up, and the death of the patients. RESULTS: Delirium even in the healthy community-dwelling subjects indicated a poor prognosis. After 3 years, 18 patients (35%) from the intervention group and 9 patients (18%) from the controls were in community care. The mean duration of community care was 671 days in the intervention group and 503 days in the control group, p = .025. A reduction of 19 years was achieved in the cumulative time spent in long-term institutionalized care. The use of short-duration hospitalization was similar in both groups. CONCLUSION: The institutionalization of elderly patients after a delirious state could be delayed using rehabilitation periods and systematic intervention with the case manager concept.

Emotional reactions and life changes of caregivers of demented patients when home caregiving ends.

Many studies indicate that the cessation of caregiving of demented patients has positive effects on caregivers' lives but contradictory findings have also been reported. The aim of this study was to investigate how the caregivers of demented patients experienced the cessation of caregiving, how caregivers' lives changed after this event, and which factors predicted emotional reactions and life changes. Data were collected from 64 caregivers of demented patients, recruited from a previous controlled intervention study. The semi-structured telephone interviews sought (1) sociodemographic data, (2) emotional reactions the caregivers recalled from the point of cessation of caregiving, and (3) life changes experienced after that time point. At the point of cessation of caregiving, spouse caregivers had higher risk for loneliness, depressive feelings and sorrow than non-spouse caregivers. Feelings of relief were associated with non-spouses. Community care support obtained during the previous intervention study had protected the caregivers from loneliness, depressive feelings and sorrow. After the end of caregiving, spouse caregivers tended to experience more negative life changes. The increased number of leisure activities was associated with the support during community care.

Delirium in the non-demented oldest old in the general population: risk factors and prognosis.

BACKGROUND: The oldest old are prone to develop delirium. Studies into risk factors for delirium have been carried out predominantly in younger age groups. The aim of this population-based follow-up study was to investigate the risk factors for delirium requiring medical attention and subsequent prognosis in the non-demented general population aged > or = 85 years. METHOD: The study included the non-demented subjects in the population-based Vantaa 85+ study. After the 3-year observation period, 199 subjects (91% of those surviving) were re-examined and their medical records were evaluated for episodes of delirium. The subjects were followed up with respect to mortality for another 2 years. RESULTS: During the 3-year observational period, 20 subjects (10%) had been diagnosed as having had an episode of delirium. A Mini-Mental State Examination score of < 24 (odds ratio (OR) 3.44, confidence interval (CI = 95%) 1.27-9.32) and high systolic blood pressure (OR 3.08, CI 1.08-8.79) were identified as independent risk factors for delirium. The association between the delirium episode and a new diagnosis of dementia was significant ( p = 0.001). The mortality rate was greater among those subjects who experienced delirium than among subjects without this syndrome ( p = 0.008). CONCLUSIONS: Mild cognitive impairment and high systolic blood pressure were found to be risk factors for delirium requiring medical attention in the general non-demented population aged > or = 85 years. The study also highlights the significant association between delirium and a new dementia diagnosis in this age group.