Met and unmet care needs of older people with dementia living at home: Personal and informal carers’ perspectives

Dementia ◽  
2017 ◽  
Vol 18 (6) ◽  
pp. 1963-1975 ◽  
Author(s):  
Justyna Mazurek ◽  
Dorota Szcześniak ◽  
Katarzyna Urbańska ◽  
Rose-Marie Dröes ◽  
Joanna Rymaszewska
Keyword(s):  
Older People ◽  
Daily Living ◽  
Multidisciplinary Treatment ◽  
Holistic Approach ◽  
Care Needs ◽  
The People ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Informal Carers ◽  
At Home

In Poland, there are few reports of the holistic approach to caring for older people with dementia. The aim of this study was to assess the needs of people with dementia living at home. This was done by evaluating the perspective of people with dementia themselves and that of their carers. The study included 47 people diagnosed with mild to moderate dementia and 41 informal carers, all living in Wroclaw in Poland, involved in the MeetingDem project. The needs were assessed using the CANE. Other scales used were: the MMSE, the GDS and the QOL-AD. The carers reported significantly more needs, both met and unmet, than the people with dementia themselves. The most frequent reported unmet needs both by the people with dementia and their carers included activities of daily living, psychological distress and the need for company. Based on this study’s findings, tailored multidisciplinary treatment, adjusted to their needs and wishes, can be offered thus creating integrated and individualised support.

scholarly journals Older and ‘staying at home’ during lockdown: informal care receipt during the COVID-19 pandemic amongst people aged 70 and over in the UK

2020 ◽  
Author(s):  
Maria Evamdrou ◽  
Jane Falkingham ◽  
Min Qin ◽  
Athina Vlachantoni
Keyword(s):  
Older People ◽  
Daily Living ◽  
Community Action ◽  
Living Alone ◽  
Care Needs ◽  
Different Types ◽  
Household Members ◽  
The Uk ◽  
Staying At Home ◽  
At Home

On 23 March 2020 the UK went into lockdown in an unprecedented step to attempt to limitthe spread of coronavirus. Government advice at that time was that all older people aged 70and over should stay at home and avoid any contact with non-household members. This studyuses new data from the Understanding Society COVID 19 survey collected in April 2020,linked to Understanding Society Wave 9 data collected in 2018/19, in order to examine theextent of support received by individuals aged 70 and over in the first four weeks oflockdown from family, neighbours or friends not living in the same household, and how thatsupport had changed prior to the outbreak of the coronavirus pandemic. The researchdistinguishes between different types of households as, given with guidance not to leavehome and not to let others into the household, those older people living alone or living onlywith a partner also aged 70 and above are more likely to be particularly vulnerable. Theresults highlight both positive news alongside causes for concern. The receipt of assistancewith Instrumental Activities of Daily Living (IADLs), especially shopping, has increasedparticularly among those living alone or with an older partner, reflecting the rise ofvolunteering and community action during this period. However, not all older people reporteda rise, and the majority reported ‘no change’, in the support received. Moreover, amongstthose older people reporting that they required support with at least one Activity of DailyLiving (ADL) task prior to the pandemic, around one-quarter reported receiving no care fromoutside the household and one-in-ten of those with two or more ADL care needs reportedreceiving less help than previously. Although formal home care visits have continued duringthe pandemic to those who have been assessed by the local government to be in need, it isimportant to acknowledge that some older people risk not having the support they need.

Enabling the person with moderate dementia to remain at home

2020 ◽  
Vol 14 (7) ◽  
pp. 324-329
Author(s):  
Linda Nazarko
Keyword(s):  
Public Health ◽  
Older People ◽  
End Of Life ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Care At Home ◽  
The Uk ◽  
At Home

Most older people would prefer to remain at home and receive care at home until the end of life. In the UK, around 16% of older people die at home ( Hall et al, 2011:3 , Figure 1:1) and around 10% of people with dementia die at home ( Public Health England (PHE), 2019 ). In Europe, including the UK, the population is ageing and it is important that older people are enabled to remain at home whenever possible ( Hall et al, 2011 ). As dementia progresses, this can become more difficult, but can be managed if the appropriate support is provided. This article explores ways to support people with moderate dementia to remain at home.

Care at home for people with dementia: as in a total institution?

2006 ◽  
Vol 27 (1) ◽  
pp. 3-24 ◽  
Author(s):  
JANET ASKHAM ◽  
KATE BRIGGS ◽  
IAN NORMAN ◽  
SALLY REDFERN
Keyword(s):  
Intimate Relationships ◽  
Social Relationship ◽  
Intimate Relationship ◽  
Total Institution ◽  
Home Life ◽  
The People ◽  
People With Dementia ◽  
Custodial Care ◽  
Care At Home ◽  
At Home

This article examines three kinds of social relationship likely to be present when people with dementia are cared for at home by relatives or friends: custodial care, an intimate relationship, and home-life. Using Goffman's three defining aspects of custodial care – routinisation, surveillance and mortification of the self – the paper examines whether these characterised the care of people with dementia at home and, if so, whether they conflicted with the intimate relationship and with home-life. The study involved sustained observations and interviews with 20 people with dementia and their carers in and around London, and qualitative analysis of the data. It was found that all three aspects of custodial care were present although not fully realised, and that they led to difficulties, many of which were associated with the concurrent pursuit of an intimate relationship and home-life. In all cases, daily life was routinised partly to help accomplish care tasks but was found monotonous, while surveillance was usual but restrictive, and prevented both the carers and those with dementia from doing things that they wished to do. Those with dementia were distressed by the denial of their former identities, such as car-driver or home-maker, and by being treated like children. Both the carers and the people with dementia had various ways of balancing custodial care, their intimate relationships and home-life, such as combining routines with other activities, evading surveillance or carrying it out by indirect means, and there were many attempts to maintain some semblance of former identities.

Everyday Experience of Front-Line Professionals and In/Formal Carers

2012 ◽  
Vol 2 (3) ◽  
pp. 27-39 ◽  
Author(s):  
Henglien Lisa Chen
Keyword(s):  
Older People ◽  
Needs Assessment ◽  
Well Being ◽  
Care Needs ◽  
Term Care ◽  
Face To Face ◽  
Care Services ◽  
Care Systems ◽  
Informal Carers ◽  
The Impact

To address the risks to families of the availability of care for their older family members, this paper explores the impact of different care systems on the way that relevant care actors contribute to the long-term care of older people. It is based on an empirical study of the care needs assessment and care provision in England, the Netherlands and Taiwan. The participants in the study include 143 care actors at national, regional and local levels across the countries. It found that the objective of providing care needs is similar in each of the countries studied. However, the everyday life of professionals and in/formal carers differs based on the care culture and care policy in each country. Overall, care professionals and formal carers experience satisfaction in their caring role when sufficient time is available for them to work with individuals. Face-to-face contact with older people is important to care professionals if adequate needs assessment could be performed. Helping informal carers extend their ability to carry out their role may improve their well-being as carers and reduce the demand for formal care services.

scholarly journals Does the Meeting Centres Support Programme reduce unmet care needs of community-dwelling older people with dementia? A controlled, 6-month follow-up Polish study

2019 ◽  
Vol Volume 14 ◽  
pp. 113-122 ◽  
Author(s):  
Justyna Mazurek ◽  
Dorota Szcześniak ◽  
Katrzyna Urbańska ◽  
Rose-Marie Dröes ◽  
Maciej Karczewski ◽  
...  
Keyword(s):  
Older People ◽  
Community Dwelling ◽  
Care Needs ◽  
Support Programme ◽  
People With Dementia ◽  
Polish Study ◽  
Community Dwelling Older People

“I needed someone to hold my hand”: Experiences and Unmet Palliative Care Needs at Home from the Perspective of People with Dementia and Caregivers (GP741)

2020 ◽  
Vol 60 (1) ◽  
pp. 269-270
Author(s):  
Krista Harrison ◽  
Sarah Garrett ◽  
Alissa Bernstein ◽  
Georges Naasan ◽  
Christine Ritchie
Keyword(s):  
Palliative Care ◽  
Care Needs ◽  
People With Dementia ◽  
Palliative Care Needs ◽  
At Home

scholarly journals Meeting the needs of older people living at home with dementia who have problems with continence

2017 ◽  
Vol 18 (4) ◽  
pp. 246-253 ◽  
Author(s):  
Vari M. Drennan ◽  
Jill Manthorpe ◽  
Steve Ilifffe
Keyword(s):  
Older People ◽  
Social Care ◽  
Clinical Care ◽  
Care Practice ◽  
Service Improvement ◽  
Content Type ◽  
People With Dementia ◽  
Care Relationships ◽  
The Impact ◽  
At Home

Purpose The purpose of this paper is to discuss the question of how to meet the needs of older people living at home with dementia who have problems with continence. The paper is focused on social care practice in community settings. Design/methodology/approach This paper is practice focused and draws on the authors’ research and experiences in clinical care, workforce development and service improvement. Findings This paper summarises research on incontinence and its negative effects on quality of life and care relationships. It describes the impact of incontinence in terms of social embarrassment, restricted social activity, extra work (such as laundry) and costs, but also distress. It links research with care practice, with a focus on people with dementia who may be at particular risk of both continence problems and of assumptions that nothing can be done to assist them. Social implications This paper provides questions that could be addressed in commissioning and provision of services and argues that they need to be informed by care practitioners’ experiences. It provides details of sources of support that are available at national and local levels. Originality/value This paper draws together research on continence and social care practice to provide a series of self-assessment questions for local services. It focuses on social care workers who are at the frontline of practice including personal assistants and carers.

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