Impact of Untimely Access to Formal Care on Costs and Quality of Life in Community Dwelling People with Dementia

Janssen, Niels; Handels, Ron; Sköldunger, Anders; Woods, Bob; Jelley, Hannah; Edwards, Rhiannon Tudor; Orrell, Martin; Selbæk, Geir; Røsvik, Janne; Gonçalves-Pereira, Manuel; Marques, Maria J.; Zanetti, Orazio; Portolani, Elisa; Irving, Kate; Hopper, Louise; Meyer, Gabriele; Bieber, Anja; Stephan, Astrid; Kerpershoek, Liselot; Wolfs, Claire; Vugt, Marjolein E. de; Verhey, Frans R.J.; Wimo, Anders

doi:10.3233/jad-180531

Cited by 14 publications

(16 citation statements)

References 29 publications

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“…Identifying and seeking to meet unmet needs of people with dementia is important because unmet needs have been found to be associated with a lower health-related quality of life (Handels et al, 2018;Hoe, Hancock, Livingston, & Orrell, 2006;Janssen et al, 2018;Kerpershoek et al, 2018;Miranda-Castillo et al, 2010). Miranda-Castillo et al (2010) suggest that unmet needs mediate the relationship between behavioural and psychological symptoms of dementia (BPSD) and quality of life.…”

Section: Introductionmentioning

confidence: 99%

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study

Michelet

Selbæk

Strand

et al. 2021

Aging & Mental Health

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Objectives: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. Methods: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. Results: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p < 0.001), 0.76 (p < 0.001) and 0.78 (p = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p = 0.007) and at six months follow-up (mean 0.31 points, p = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 (p = 0.033), 0.67 (p < 0.001) and 0.91 (p < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p = 0.005) and at six months (mean 0.35 points, p = 0.002) follow-up. Conclusion: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

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Section: Introductionmentioning

confidence: 99%

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study

Michelet

Selbæk

Strand

et al. 2021

Aging & Mental Health

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“…This implies that memory problems create demanding care needs that are not met, even with a combination of public home-care services and informal care. The consequences of unmet care needs are drastic: a lower quality of life [29], predictive of residential care and even death [30]. In terms of appropriate help and decent living conditions, attention should be given to the group of people who live at home with memory problems and complex care needs.…”

Section: Discussionmentioning

confidence: 99%

Unmet care needs are common among community-dwelling older people with memory problems in Finland

Aaltonen

Aerschot

2019

Scand J Public Health

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Aims: Ageing in place has become a policy priority. Consequently, residential care has been reduced, and more older people with multiple care needs reside at home with the help of informal care and home care services. An increasing share of these people has memory disorders. We examined the extent to which memory problems, in addition to other individual characteristics, are associated with unmet care needs among community-dwelling older people. Methods: The study employed cross-sectional survey data from community-dwelling people aged 75+ collected in 2010 and 2015, analysed using binary logistic regression analysis. The study population consisted of people who had long-term illnesses or disabilities that limited their everyday activities ( N = 1928). Nine per cent reported substantial memory problems. Of these, 35.7% had a proxy respondent. Results: People with memory problems have more care needs than those with other types of disability or illness. They receive more care but still have more unmet needs than others. About a quarter of people with memory problems reported that they did not receive enough help. This result did not change significantly when the proxy responses were excluded. Even a combination of informal and formal home care was insufficient to meet their needs. Conclusions: Insufficient care for people with memory problems implies a serious demand for further development of home care services. The care needs of this population are often complex. Unmet needs represent a serious risk to the well-being of people with memory disorders, and may also create an extensive burden on their informal caregivers.

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“…Johanessen et al, 2017). Importantly, experiencing unmet needs is linked to a lower quality of life (Janssen et al, 2018), so that identifying suitable care services is vital for rare dementias. However, with these subtypes being cumulatively less common than Alzheimer's dementia, it is worthwhile bringing people with different subtypes and their families together in order to better understand what can be provided for these groups jointly, as providing a community activity only for people with Lewy Body dementia for example would see few people attending merely because of the low numbers of people with a diagnosis in any given community.…”

Section: What Is Known About the Topicmentioning

confidence: 99%

Understanding the Needs of People With Rare Dementias and Recommendations for Improving Post-diagnostic Care: ‘There Is No Such Thing as One Size Fits All’

Giebel

Cannon

Smith³

et al. 2021

Preprint

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People with rare dementias such as Lewy Body dementia show different symptoms to those with Alzheimer’s dementia. Due to the large proportion of people with Alzheimer’s dementia, most services are designed to support their needs and often neglect those of people with rarer dementias. The aim of this study was to understand the needs of people with rare dementias and their families to develop targeted support. Two care professional focus groups were held in the North West of England. Focus groups lasted up to 60 minutes and were subsequently transcribed and analysed via thematic analysis. One former carer for her husband with a rare dementia was an active member of the project team and helped design the interview schedule, interpret and disseminate the findings. 18 dementia care professionals took part. Thematic analysis generated six themes: (1) Complex needs unsupported; (2) Reluctance to approach services; (3) Lack of service adaptation to both people living with dementia and carers; (4) Lack of communication between service providers; (5) Environment of service provision; (6) Funding issues. As opposed to suggesting new types of social activities, focus groups identified significant barriers in approaching and using post-diagnostic for those affected by a rare dementia, as well as inequalities in access to care services. There are various personal and service barriers for people with rarer dementias and unpaid carers to accessing and using post-diagnostic services. Future implementation work needs to adapt services and identify ways in which to overcome barriers in approaching services.

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Impact of Untimely Access to Formal Care on Costs and Quality of Life in Community Dwelling People with Dementia

Abstract: Impact of untimely access to formal care on costs and quality of life in community dwelling people with dementia

Cited by 14 publications

References 29 publications

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study

Unmet care needs are common among community-dwelling older people with memory problems in Finland

Understanding the Needs of People With Rare Dementias and Recommendations for Improving Post-diagnostic Care: ‘There Is No Such Thing as One Size Fits All’

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