Perceived needs and support services of families of people with dementia

Dementia is a progressive and eventually terminal condition, but with early intervention and the right support, people with dementia can continue to enjoy a good quality of life for many years. Living with dementia can be challenging both for those affected and their families as it can affect all aspects of daily life. It is vital that people with dementia and their carers are signposted to the support services that can help them take control of their condition and help them remain active and independent.

Download Full-text

Low-threshold support services for people with dementia within the scope of respite care in Germany – A qualitative study on different stakeholders’ perspective

Dementia ◽

10.1177/1471301215610234 ◽

2015 ◽

Vol 16 (5) ◽

pp. 576-590 ◽

Cited By ~ 4

Author(s):

Iris Hochgraeber ◽

Milena von Kutzleben ◽

Sabine Bartholomeyczik ◽

Bernhard Holle

Keyword(s):

Support Services ◽

Long Term Care ◽

Support Service ◽

Professional Services ◽

Family Carers ◽

Term Care ◽

People With Dementia ◽

Long Term Care Insurance ◽

Low Threshold

Low-threshold support services are provided within the basket of services of German long-term care insurance as a part of respite care to support family carers and people with dementia. This study investigates various stakeholders’ (providers, coordinators, volunteers, family carers and people with dementia) perspectives on low-threshold support service regarding its organisation and conceptualisation as well as how stakeholders and users value low-threshold support service using a qualitative approach. Twelve guided interviews and group discussions were conducted with 31 participants. Organisation and conceptualisation are characterised by the lowness of the service thresholds, which is perceived to be quick and simple forms of support with no user requirements. Multiple barriers such as the challenging behaviour of people with dementia and their initial refusal as well as their holding low-threshold support service in low esteem can hinder the utilisation of these services. Low-threshold support service within the scope of the long-term care insurance law can be separated into two types: low-cost (non-professional) services and high-cost services with comprehensive training for ‘employed’ volunteers (professional). Both types are constantly developing within the landscape of the German long-term care system, and low-threshold support service appears to be adapted to diverse needs. Therefore, it is important to avoid replacing non-professional services with professional services.

Download Full-text

A Qualitative 5-Country Comparison of the Perceived Impacts of COVID-19 on People Living with Dementia and Unpaid Carers

10.21203/rs.3.rs-1013091/v1 ◽

2021 ◽

Author(s):

Clarissa Giebel ◽

Katarzyna Lion ◽

Maria Mackowiak ◽

Rabih Chattat ◽

PN Suresh Kumar ◽

...

Keyword(s):

Public Health ◽

Physical Health ◽

Support Services ◽

Public Health Problem ◽

Emotional Impact ◽

Global Public Health ◽

Global Comparison ◽

People With Dementia ◽

Informal Carers ◽

The Uk

Abstract Background Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. Methods Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. Results Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. Conclusions The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.

Download Full-text

Mind the gap: Comparing perspectives of service providers to the needs of people with dementia living in the community

Dementia ◽

10.1177/1471301220947837 ◽

2020 ◽

pp. 147130122094783

Author(s):

Claire Morrisby ◽

Marina Ciccarelli ◽

Annette Joosten

Keyword(s):

Qualitative Data ◽

Service Providers ◽

Descriptive Study ◽

The West ◽

Diverse Range ◽

Building Capacity ◽

Perceived Needs ◽

People With Dementia ◽

Australian Community ◽

Services And Supports

Introduction Research with West Australian people with dementia and their carers living in the community identified that they have a diverse range of needs. However, little is known about the needs of people with dementia and their carers from the perspectives of service providers who provide formal support. This study aimed to investigate the needs of people with dementia and their carers living in the community from the perspectives of service providers, and compare this to service recipients. Method This interpretive descriptive study used focus groups to collect qualitative data from service providers ( N = 10). Data were analysed using a hybrid inductive–deductive approach to compare the needs identified by service providers to those identified by people with dementia and their carers. Results Three major themes were identified: (i) services and supports required by people with dementia and their carers should be flexible, tailored, and equitable; (ii) building capacity to support carers and people with dementia; and (iii) systems designed to care were fragmented and difficult to navigate. Service providers prioritise needs that are limited to their current capacity to provide in contrast to the holistic needs of people with dementia and their carers. Conclusion There was poor alignment between the perceived needs of people with dementia and their carers and the needs prioritised by service providers in the West Australian community. This gap may reduce the ability of services to effectively support people with dementia to remain living in the community.

Download Full-text

Making the journey brighter: early diagnosis and support services for people with dementia and their carers Alzheimer Scotland Making the journey brighter: early diagnosis and support services for people with dementia and their carers £8 p&pfree 0 9488970948897

Nursing Older People ◽

10.7748/nop.15.6.43.s16 ◽

2003 ◽

Vol 15 (6) ◽

pp. 43-43

Keyword(s):

Early Diagnosis ◽

Support Services ◽

People With Dementia

Download Full-text

Self-help as a relief strategy for Turkish family caregiver of people with dementia? A Scoping Review

European Journal of Public Health ◽

10.1093/eurpub/ckz186.076 ◽

2019 ◽

Vol 29 (Supplement_4) ◽

Author(s):

H Tezcan-Güntekin ◽

I Özer-Erdogdu ◽

Y Yilmaz-Aslan

Keyword(s):

Scoping Review ◽

Support Services ◽

Family Caregiver ◽

Migration Background ◽

Self Help ◽

Dementia Patients ◽

People With Dementia ◽

Turkish Family ◽

Knowledge Deficits ◽

High Degree

Abstract Background The number of dementia patients with a migration background is rising in the process of demographic change in Germany. For people with a migration background, care is usually provided at home and is accompanied by an increased burden on relatives. Alleviating support services are rarely used. Methods The scoping review on burden and self-help as a relief strategy for Turkish family caregiver of people with dementia includes the databases PubMed, Livivo, CINAHL and Web of Science and is completed by a ’by hand’ analysis in Google and Google Scholar. A total of 24 publications were included in the analysis. Results Family caregiver of Turkish origin show a high degree of willingness to assume responsibility for care, show knowledge deficits with regard to support services and are exposed to heterogeneous burdens. People with a migration background hardly make use of self-help. Self-help as a relief strategy could be strengthened by needs-oriented and culturally diverse services. Conclusions There is a need for action to improve domestic care for people with a migrant background. This requires the involvement of stakeholders such as those in need of care, caring relatives and professional carers. Self-help for people with a migration background can be activated and promoted with target group-oriented approaches. The support measures should be designed to be sensitive to diversity and correspond to the heterogeneity of the users and their life situations. Key messages Self-help for migrants must be flexible and user-oriented. Diversity-sensitivity in self-help could address people who are difficult to reach.

Download Full-text

Perceived Needs of The Family Caregivers of People with Dementia in a Mediterranean Setting: A Qualitative Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph16060993 ◽

2019 ◽

Vol 16 (6) ◽

pp. 993 ◽

Cited By ~ 8

Author(s):

Sara Moreno-Cámara ◽

Pedro Palomino-Moral ◽

Lourdes Moral-Fernández ◽

Antonio Frías-Osuna ◽

Laura Parra-Anguita ◽

...

Keyword(s):

Qualitative Study ◽

Family Caregivers ◽

Emotional Health ◽

Educational Interventions ◽

Care Process ◽

Perceived Needs ◽

People With Dementia ◽

The Family ◽

Field Notes ◽

Primary Health Care Centers

The purpose of this study was to identify, classify and analyze the perceived needs of caregivers of elderly people with dementia during the care process. A descriptive phenomenological qualitative study using seven focus groups was conducted in different primary health care centers in the province of Jaén (Spain) between July 2012 and February 2013. Eighty-two family caregivers who were caring for people with dementia in different stages of the disease were selected by purposeful maximum variation sampling. Data were analyzed and organized thematically, considering the semantic and pragmatic content and field notes. Two main categories of the perceived needs of caregivers were identified. The first was related to the management of caring for a relative with dementia, and the second was related to the management of the caregivers’ own care. Our findings support the provision of comprehensive interventions for the improvement of caregivers’ emotional health that encompass more than one care need. This is where psycho-educational interventions aimed at managing the various aspects of dementia and self-care in caregivers can be accommodated. In addition, proactive interventions to develop important skills to care for a relative with dementia, which are not perceived as needs by the caregivers, are needed. These include skills in family negotiation, planning and searching for resources outside the family.

Download Full-text