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Informal care

Cost analysis of informal care: estimates from a national cross-sectional survey in Sweden

Background: Over the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers’ overall health. However, estimates of the social costs of informal care based on national data on individuals are currently scarce.

Wed, 08/24/2022 - 12:59

Experiences of people with memory disorders and their spouse carers on influencing formal care: “They ask my wife questions that they should ask me”

Background: People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers.

Wed, 08/24/2022 - 12:53

Changes in caregiver personal support networks: Gender differences and effects on health (cuidar-se study)

Background: Technological changes have led to important advances in medical diagnoses and treat-ments that prolong the informal care process. Support from the personal network of informal caregivers is an undervalued resource and the changes that have occurred over time are unknown.

Wed, 08/24/2022 - 00:46

Total cost of care increases significantly from early to mild Alzheimer's disease: 5-year ALSOVA follow-up

Background: We studied the costs of formal and informal care in relation to Alzheimer's disease (AD) progression. Methods: 231 persons with AD with a family caregiver were followed up for 5 years. The Clinical Dementia Rating Scale-Sum of Boxes (CDR-SB) was used to measure AD progression. Health and social care unit costs were used for formal care costs. An opportunity cost method for lost leisure time was applied to analyse the cost of informal care.

Tue, 08/23/2022 - 15:32

Exploring the experiences of living with Lewy body dementia: An integrative review

Objectives: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. Methods: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE.

Tue, 08/23/2022 - 13:33

Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting

Background: Informal caregiving is an integral part of post-stroke recovery with strenuous caregiving demands often resulting in caregiving burden, threatening sustainability of caregiving and potentially impacting stroke survivor’s outcomes. Objectives: Our study aimed to examine and quantify objective and subjective informal care burden after stroke; and to explore the factors associated with informal care burden in Singapore.

Thu, 08/18/2022 - 17:30

Are informal family caregivers stigmatized differently based on their gender or employment status?: a German study on public stigma towards informal long-term caregivers of older individuals

Background: Stigma and informal caregiving are determinants for health and wellbeing, but few studies have examined stigma towards informal caregiving. Public stigma may be expressed differently towards caregivers depending on their gender and employment status due to societal norms. Therefore, this study analyzes if there is a difference in public stigma shown by the general population toward informal caregivers of care recipients aged 65 years or older based on the observed caregiver’s gender or working status.

Thu, 08/18/2022 - 14:23

Association between having cancer and psychological distress among family caregivers using three years of a nationwide survey data in japan

Objectives: We aimed to describe the characteristics of caregivers with cancer compared to those without and analyze the association between having cancer and caregivers’ psychological distress in Japan. Methods: We used data from the Japanese Comprehensive Survey of Living Conditions in 2010, 2013, and 2016. The participants were 5258 family caregivers aged ≥40 years, caring for only one family member whose information in the dataset was available for all the covariates included in the model.

Thu, 08/18/2022 - 13:26

Balancing care demands and personal needs: A typology on the reconciliation of informal dementia care with personal life based on narrative interviews

Background: Finding a balance between care and personal needs is often challenging for individuals caring for a person with dementia. Objectives: The present study aimed to understand how primary and secondary family carers of people with dementia perceive the reconciliation of informal care and their personal life throughout the course of care. Methods: Narrative interviews with 14 carers (n=10 female, mean age: 48.79) from seven care networks were conducted. The interviews were analysed using the documentary method.

Thu, 08/18/2022 - 12:40

Beyond nostalgia: Older people's perspectives on informal care in rural Flanders

Background: Flanders (Belgium) is aging at high speed. In 2060, almost one in three (32 percent) will be older than 60. The number of people aged 80 and over will increase from more than 400,000 today to nearly 800,000 in 2060. This demographic change can be witnessed throughout the entire region, yet older people are overrepresented in rural areas. A large majority of older people is ‘aging in place’. This often occurs in places that witness a severe decline in basic facilities and that suffer from a loss of its young(er) population.

Thu, 08/18/2022 - 12:33

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