Costs of formal and informal care at home for people with dementia

Giebel, C.M. et al. Costs of formal and informal care at home for people with dementia: ‘Expert panel’ opinions from staff and informal carers. Dementia. Published online before print August 22, 2016

Abstract:

Effective home support in dementia is key in delaying nursing home admission. However, home support is frequently not tailored to the individual needs of people with dementia. Staff allocating home support services may not identify important care needs, which only be recognised by informal carers.

The purpose of this study was to explore the balance of informal and formal home support and their associated costs from the perspectives of both informal carers and paid staff. Five case vignettes of people with dementia were designed based on an existing English data set from a European study into transition into long-term care (the RightTimePlaceCare programme), representing 42 per cent of the English sample. In total, 14 informal carers and 14 paid staff were consulted in separate groups, as expert panels, regarding their recommendations for home care services for each vignette.

Care recommendations of carers and staff were costed based on nationally available unit costs and compared. Informal carers allocated fewer hours of care than staff. Personal and domestic home care and day care centres were the most frequently recommended formal services by both groups, and some vignettes of people with dementia were recommended for care home admission. The ratio of costs of informal versus formal support was relatively equal for paid staff, yet unbalanced from the perspectives of informal carers with a greater proportion of formal care costs. Recommendations from this study can help shape dementia care to be more tailored to the individual needs of people with dementia and their carers.

Risk of dementia and death in community-dwelling older men with bipolar disorder

Almeida, O.P. et al. The British Journal of Psychiatry .Aug 2016. 209 (2). pp. 121-126;

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Image source: Susan Lockhart – Wellcome Images // CC BY-NC-ND 4.0

Background: Bipolar disorder has been associated with cognitive decline, but confirmatory evidence from a community-derived sample of older people is lacking.

Aims: To investigate the 13-year risk of dementia and death in older adults with bipolar disorder.

Method: Cohort study of 37 768 men aged 65–85 years. Dementia (primary) and death (secondary), as recorded by electronic record linkage, were the outcomes of interest.

Results: Bipolar disorder was associated with increased adjusted hazard ratio (HR) of dementia (HR = 2.30, 95% CI 1.80–2.94). The risk of dementia was greatest among those with <5 years of history of bipolar disorder or who had had illness onset after 70 years of age. Bipolar disorder was also associated with increased mortality (HR = 1.51, 95% CI 1.28–1.77). Competing risk regression showed that bipolar disorder was associated with increased hazard of death by suicide, accidents, pneumonia or influenza, and diseases of the liver and digestive system.

Conclusions: Bipolar disorder in later life is associated with increased risk of dementia and premature death.

Read the abstract here

Differences in quality of life in home-dwelling persons and nursing home residents with dementia

Olsen, C et al. Differences in quality of life in home-dwelling persons and nursing home residents with dementia – a cross-sectional study.  BMC Geriatrics published 11 July 2016

Background

Dementia often eventually leads to dependency on others and finally to residential care. However, in Norway about half of the dementia population lives at home, due to individual and political wishes. There is scarce and inconclusive knowledge of how living in a nursing home differs from living at home for persons with dementia (PWDs) with regard to their quality of life (QoL). The first aim of the study was therefore to compare QoL, cognitive and physical functions, social contacts, sleep patterns, physical activity levels, exposure to light, and medication of PWDs in nursing homes and home-dwelling PWDs, and whether living in nursing homes was associated with a lower QoL than living at home for PWDs. A second aim was to examine if possible differences between residencies in QoL were consistent over time.

Methods

The cross-sectional study was based on baseline data from two RCT studies of PWDs. A total of 15 nursing homes with adapted units for PWDs and 23 adapted day care centres for home-dwelling PWDs recruited 78 and 115 participants respectively. Trained nurses scored sociodemographic data, level of dementia (on the Clinical Dementia Rating scale), amount of medication, and QoL (QUALID). Sleep patterns, physical activity levels, and light exposure were measured by actigraphy. A multiple regression analysis was used to test the association between residency and QoL. The association between residency and change in QoL over time was investigated by linear regression analysis of a subsample with follow-up data.

Results

Home-dwelling PWDs showed significantly higher QoL than PWDs in nursing homes. This difference was maintained even after stratifying on the severity of dementia. Home-dwelling PWDs with moderate dementia showed significantly less use of walking aids, more social contact, higher levels of activity and exposure to daylight, and less use of psychotropic medications. The regression model explained 28 % of the variance in QoL in persons with moderate dementia. However, only residency contributed significantly in the model. Residency also significantly predicted negative change over time in QoL.

Conclusion

The study indicated that living at home as long as possible is not only desirable for economic or health political reasons but also is associated with higher QoL for persons with moderate dementia. More studies are needed to investigate how QoL could be increased for PWDs in nursing homes.

Full text available via BMC Geriatrics

Workforce development to provide person-centered care

Person-centered care can be effectively implemented by well-trained CCAs in the community.

Abstract:

Objectives: Describe the development of a competent workforce committed to providing patient-centered care to persons with dementia and/or depression and their caregivers; to report on qualitative analyses of our workforce’s case reports about their experiences; and to present lessons learned about developing and implementing a collaborative care community-based model using our new workforce that we call care coordinator assistants (CCAs).

Method: Sixteen CCAs were recruited and trained in person-centered care, use of mobile office, electronic medical record system, community resources, and team member support. CCAs wrote case reports quarterly that were analyzed for patient-centered care themes.

Results: Qualitative analysis of 73 cases using NVivo software identified six patient-centered care themes: (1) patient familiarity/understanding; (2) patient interest/engagement encouraged; (3) flexibility and continuity of care; (4) caregiver support/engagement; (5) effective utilization/integration of training; and (6) teamwork. Most frequently reported themes were patient familiarity – 91.8% of case reports included reference to patient familiarity, 67.1% included references to teamwork and 61.6% of case reports included the theme flexibility/continuity of care. CCAs made a mean number of 15.7 (SD = 15.6) visits, with most visits for coordination of care services, followed by home visits and phone visits to over 1200 patients in 12 months.
Full reference: Mary Guerriero Austrom et. al. Workforce development to provide person-centered care Aging & Mental Health Volume 20, Issue 8, 2016.

Non-pharmacological interventions for managing dementia-related sleep problems within community dwelling pairs: A mixed-method approach

Rosemary H Gibson et al. Dementia: January 14, 2016

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Image source: Flickr

Abstract: 

Dementia-related sleep problems can be complex and challenging. Environmental interventions which resynchronise the sleep/wake cycle have been trialled with promising results for people with dementia in institutionalised settings. However, there is less research concerning community-dwelling people with dementia and their family carers.

This study involved a five-week feasibility study including timed light therapy, exercise and sleep education. Sleep and physical and mental functioning were measured at the beginning and end of the trial using objective measures, standardised questionnaires and structured participant feedback. Of 15 community-dwelling pairs who participated, nine completed the trial.

The case studies presented here reveal that it is feasible for this population to use non-pharmacological interventions, with positive outcomes. However, there are also issues that can mask benefits or prevent compliance. The options for treating dementia are limited. Environmental interventions may help manage dementia-related sleep problems and further trials would be worthwhile to improve compliance and evaluate effectiveness.

View the article abstract here

Workforce development to provide person-centered care

Mary Guerriero Austrom. Aging & Mental Health. Published online: 15 Dec 2015

Objectives: Describe the development of a competent workforce committed to providing patient-centered care to persons with dementia and/or depression and their caregivers; to report on qualitative analyses of our workforce’s case reports about their experiences; and to present lessons learned about developing and implementing a collaborative care community-based model using our new workforce that we call care coordinator assistants (CCAs).

Method: Sixteen CCAs were recruited and trained in person-centered care, use of mobile office, electronic medical record system, community resources, and team member support. CCAs wrote case reports quarterly that were analyzed for patient-centered care themes.

Results: Qualitative analysis of 73 cases using NVivo software identified six patient-centered care themes: (1) patient familiarity/understanding; (2) patient interest/engagement encouraged; (3) flexibility and continuity of care; (4) caregiver support/engagement; (5) effective utilization/integration of training; and (6) teamwork. Most frequently reported themes were patient familiarity – 91.8% of case reports included reference to patient familiarity, 67.1% included references to teamwork and 61.6% of case reports included the theme flexibility/continuity of care. CCAs made a mean number of 15.7 (SD = 15.6) visits, with most visits for coordination of care services, followed by home visits and phone visits to over 1200 patients in 12 months.

Discussion: Person-centered care can be effectively implemented by well-trained CCAs in the community.

Do house calls benefit older adults with dementia?

Wilson, K., & Bachman, S.S. (2015). House Calls: The Impact of Home-Based Care for Older Adults With Alzheimer’s and Dementia. Social Work in Health and Care, 54 (6), 547-558 

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Image source: NHS PhotoLibrary

Commentary via the Social Care Elf blog by Clarissa Giebel

There are many things which can make it difficult for a person with dementia to live at home. Most people with dementia are older adults, which increases the likelhood of having some medical or physical conditions, such as vascular problems or frequent falls. Add on top of that reduced independence and the possible struggle to prepare a meal or dress yourself, and you have a combination of difficulties which can make it difficult to stay at home alone or with a family carer.

That’s not to say that people with dementia experience all these symptoms early on, but they do become more pronounced as the disease progresses, in some people earlier than in others (i.e. Giebel et al., 2014). Therefore, helping people with dementia live at home for longer is really important, and is picked up in the Prime Minister’s Challenge on Dementia 2020 (DH, 2015).

For some people that entails health care assistance in the home, whilst for others that means a greater focus on social care services. And for some it means both.

Carry on reading via the Social Care Elf Blog

View the original research article abstract here

Dementia Drug Effective in Helping Avoid Transitions into Care Homes

Analysis of data from the DOMINO-AD Trial indicates that the drug Donepezil may be effective in avoiding care home admissions in more advanced cases of Alzheimer’s Disease. Discontinuation of donepezil appears to be associated with an increased risk of nursing home admissions in community-living patients with moderate-to-severe Alzheimer’s Disease during the first 12 months following drug cessation.

Full reference: Nursing home placement in the Donepezil and Memantine in Moderate to Severe Alzheimer’s Disease (DOMINO-AD) trial: secondary and post-hoc analyses. The Lancet Neurology. [Epub ahead of print].

Related: Dementia drug ‘keeps patients out of nursing homes’ BBC News