Can extra care housing support the changing needs of older people living with dementia?

With over two-thirds of people with dementia living in the community and one-third of those living alone, it is important to consider the future housing needs of this population, particularly as symptoms of cognitive impairment increase. Policy in England has focused on enabling people living with dementia to remain in their own homes for as long as possible, often with the support of a family carer. However, many people struggle to maintain an acceptable quality of life in their own homes as their dementia advances, often due to the design limitations of mainstream housing and the challenge of finding specialist domiciliary care that is affordable and of sufficient quality. Extra care housing offers a model that aims to support older people living in their own apartments, whilst also offering specialist person-centred care as and when it is needed. This paper reports on a longitudinal project that explored how extra care housing can respond to the changing social care needs of residents, including those living with dementia. Participants included residents and staff from four extra care housing schemes, one of which was a specialist dementia scheme, in two regions of England. Interviews were carried with 51 residents across 4 rounds at 5 month intervals between October 2015 and June 2017. Interviews were also carried out with 7 managers, 20 care staff and 2 local authority commissioners of housing for older people. Key factors included person-centred care and support, flexible commissioning and staffing, appropriate design of the environment and suitable location of the scheme within the wider community. The challenge of delivering services that addresses these issues during a period of reduced public spending is acknowledged. Further research is suggested to compare different approaches to supporting people with dementia, including integrated and separated accommodation, and different stages of dementia.

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Deciding to move into extra care housing: residents’ views

Ageing and Society ◽

10.1017/s0144686x11000869 ◽

2011 ◽

Vol 32 (7) ◽

pp. 1215-1245 ◽

Cited By ~ 23

Author(s):

THERESIA BÄUMKER ◽

LISA CALLAGHAN ◽

ROBIN DARTON ◽

JACQUETTA HOLDER ◽

ANN NETTEN ◽

...

Keyword(s):

Older People ◽

Living Arrangements ◽

Independent Living ◽

Living Environment ◽

Care Needs ◽

Care And Support ◽

Care Assessment ◽

Social Leisure ◽

Leisure Facilities ◽

Extra Care Housing

ABSTRACTExtra care housing aims to meet the housing, care and support needs of older people, while helping them to maintain their independence in their own private accommodation. In 2003, the Department of Health announced capital funding to support the development of extra care housing, and made the receipt of funding conditional on participating in an evaluative study. Drawing on information collected directly from residents in 19 schemes, this paper presents findings on the factors motivating older people to move to extra care housing, their expectations of living in this new environment, and whether these differ for residents moving to the smaller schemes or larger retirement villages. In total, 949 people responded, 456 who had moved into the smaller schemes and 493 into the villages. Of the residents who moved into the villages most (75%) had not received a care assessment prior to moving in, and had no identified care need. There was evidence that residents with care needs were influenced as much by some of the attractions of their new living environment as those without care needs who moved to the retirement villages. The most important attractions of extra care housing for the vast majority of residents were: tenancy rights, flexible onsite care and support, security offered by the scheme and accessible living arrangements. The results suggest that, overall, residents with care needs seem to move proactively when independent living was proving difficult rather than when staying put is no longer an option. A resident's level of dependency did not necessarily influence the importance attached to various push and/or pull factors. This is a more positive portrayal of residents’ reasons for moving to smaller schemes than in previous UK literature, although moves did also relate to residents’ increasing health and mobility problems. In comparison, type of tenure and availability of social/leisure facilities were more often identified as important by those without care needs in the villages. Therefore, as in other literature, the moves of village residents without care needs seemed to be planned ones mostly towards facilities and in anticipation of the need for care services in the future.

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Ageing in extra-care housing: preparation, persistence and self-management at the boundary between the third and fourth age

Ageing and Society ◽

10.1017/s0144686x19000849 ◽

2019 ◽

Vol 40 (12) ◽

pp. 2711-2731 ◽

Cited By ~ 3

Author(s):

Eleanor K. Johnson ◽

Ailsa Cameron ◽

Liz Lloyd ◽

Simon Evans ◽

Robin Darton ◽

...

Keyword(s):

Older People ◽

Longitudinal Research ◽

Self Management ◽

Care Needs ◽

The Third ◽

The United Kingdom ◽

Care And Support ◽

Care Workers ◽

Operational Practices ◽

Extra Care Housing

AbstractExtra-care housing (ECH) has been hailed as a potential solution to some of the problems associated with traditional forms of social care, since it allows older people to live independently, while also having access to care and support if required. However, little longitudinal research has focused on the experiences of residents living in ECH, particularly in recent years. This paper reports on a longitudinal study of four ECH schemes in the United Kingdom. Older residents living in ECH were interviewed four times over a two-year period to examine how changes in their care needs were encountered and negotiated by care workers, managers and residents themselves. This paper focuses on how residents managed their own changing care needs within the context of ECH. Drawing upon theories of the third and fourth age, the paper makes two arguments. First, that transitions across the boundary between the third and fourth age are not always straightforward or irreversible and, moreover, can sometimes be resisted, planned-for and managed by older people. Second, that operational practices within ECH schemes can function to facilitate or impede residents’ attempts to manage this boundary.

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Older people's perspectives on living in integrated housing and care settings: the case of extra care housing

Journal of Integrated Care ◽

10.1108/jica-09-2019-0040 ◽

2020 ◽

Vol 28 (3) ◽

pp. 281-290

Author(s):

Ailsa Cameron ◽

Eleanor K Johnson ◽

Simon Evans

Keyword(s):

Qualitative Data ◽

Care Needs ◽

Housing Service ◽

Content Type ◽

Levels Of Care ◽

Care And Support ◽

Care Workers ◽

Practical Implications ◽

Extra Care Housing

PurposeThis paper explores residents' perceptions and experiences of extra care housing as an integrated model of housing with care.Design/methodology/approachData were collected in a longitudinal qualitative study based on four extra care housing schemes. Data from interviews with residents, care workers, managers and local commissioners were analysed thematically.FindingsThe integration of housing with care enabled many older people to manage their care proactively. However, the increasing number of residents with complex health and care needs, including chronic illness, led some residents to question the ability of the model to support residents to live independently.Research limitations/implicationsThe study struggled to recruit sufficient residents from the specialist dementia setting who were able to communicate their consent to take part in the research. In addition, the quality of qualitative data collected in interviews with participants at this setting reduced over successive rounds of interviews.Practical implicationsThe study suggests the need to ensure that residents are fully informed about levels of care and support is available when considering a move into extra care housing.Originality/valueThis paper provides a timely opportunity to consider extra care housing as an example of an integrated housing service, particularly in light of the current challenges facing the sector.

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Extra Care Housing: The Current State of Research and Prospects for the Future

Social Policy and Society ◽

10.1017/s1474746421000683 ◽

2021 ◽

pp. 1-12

Author(s):

Robin A. Darton

Keyword(s):

Care Needs ◽

Eligibility Criteria ◽

Supportive Environment ◽

Current State ◽

People With Dementia ◽

Care And Support ◽

Balance Of Care ◽

State Of Research ◽

Extra Care Housing

Extra care housing aims to meet the housing, care and support needs of older people, while maintaining their independence in self-contained accommodation. Evidence from several studies suggests that it has benefits for residents in terms of costs and outcomes, and can provide a supportive environment for people with dementia, although the benefits for residents with greater care needs are less clear. Budgetary pressures and increasing eligibility criteria are altering the balance of care between residents and resulting in more task-focused, less personalised care. An increasing shortfall in provision and incentives for developers to concentrate on ‘lifestyle’ provision raise questions about the long-term viability of the model for supporting local authority-funded residents. Responses to the coronavirus pandemic also raise questions about future housing and care arrangements, and these need to be addressed in the government’s long-delayed plans for social care.

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Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

Innovation in Aging ◽

10.1093/geroni/igaa057.500 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 153-154

Author(s):

Afeez Hazzan

Keyword(s):

Quality Of Life ◽

Quality Of Care ◽

Older People ◽

Family Caregivers ◽

Family Caregiver ◽

Well Being ◽

The United States ◽

People With Dementia ◽

The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

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Quality of Care Provided by Family Caregivers of Older People With Dementia: Measurement and Interpretations

Innovation in Aging ◽

10.1093/geroni/igaa057.496 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 152-152

Author(s):

Afeez Hazzan

Keyword(s):

Quality Of Care ◽

Older People ◽

Family Caregivers ◽

Family Caregiver ◽

Primary Reason ◽

People With Dementia ◽

High Level ◽

The Impact ◽

The Relationship

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.

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Effects of Occupation-Based Intervention for Older People with Mild Dementia in the Institution

Environment-Behaviour Proceedings Journal ◽

10.21834/ebpj.v6i16.2727 ◽

2021 ◽

Vol 6 (16) ◽

pp. 119-125

Author(s):

Syamsul Anwar Sultan Ibrahim ◽

Akehsan Dahlan ◽

Ahmad Zamir Che Daud

Keyword(s):

Quality Of Life ◽

Older People ◽

Cognitive Functions ◽

Social Relationship ◽

Publishing House ◽

Control Group ◽

Mild Dementia ◽

People With Dementia ◽

Significant Difference

Older people with dementia always experience the cognitive difficulties that are believed to impact their daily life significantly. However, information regarding occupation-based intervention toward older people with mild dementia in the institution is inconclusive. The results of this randomized controlled trial indicate a significant difference in cognitive functions, social relationship, and the quality of life. Participants in the experimental group improved significantly compared to the participants in the control group. Engagement in occupational activities should be encouraged to older people with mild dementia in institution to facilitate the cognitive functions, social relationship, and quality of life. Keywords: older people; mild dementia; occupation-based; quality of life eISSN: 2398-4287© 2021. The Authors. Published for AMER ABRA cE-Bs by e-International Publishing House, Ltd., UK. This is an open access article under the CC BYNC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Peer–review under responsibility of AMER (Association of Malaysian Environment-Behaviour Researchers), ABRA (Association of Behavioural Researchers on Asians/Africans/Arabians) and cE-Bs (Centre for Environment-Behaviour Studies), Faculty of Architecture, Planning & Surveying, Universiti Teknologi MARA, Malaysia. DOI: https://doi.org/10.21834/ebpj.v6i16.2727

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Detecting and Managing the Untreated Pain in Dementia

Overlapping Pain and Psychiatric Syndromes ◽

10.1093/med/9780190248253.003.0025 ◽

2020 ◽

pp. 342-356

Author(s):

Anne Corbett

Keyword(s):

Pain Management ◽

Current Evidence ◽

Public Health Issue ◽

Care Needs ◽

People With Dementia ◽

Dementia Syndrome ◽

Assessment And Treatment ◽

Person Centered Approach ◽

Established Treatment

Dementia affects more than 30 million people worldwide and is a major public health issue because of the complex treatment and care needs of these older patients. Pain is very common in people with dementia and is closely linked to key clinical outcomes, including mobility and falls, behavioral symptoms, mental health, and quality of life. Effective pain management is therefore essential to provide a good quality of care for these individuals. Pain assessment and treatment can be challenging in dementia because of loss of communication and insight as the condition progresses. There are also indications that the dementia syndrome itself affects the experience of pain and response to established treatment approaches. Guiding principles for pain management are therefore focused on a person-centered approach, with careful monitoring to avoid the risk for polypharmacy and treatment sensitivity that is common in people with dementia. This chapter outlines the current evidence pertaining to pain in people with dementia and sets out recommendations for both assessment and treatment of pain in this patient group.

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