**1.2. Caregivers supporting someone living with dementia**

Globally, care from relatives, including partners, children and extended family provides the foundation of support for people living with dementia [15]. Research has identified that caregivers looking after a family member with dementia are in most need of extra support [16].

Some researchers have contended that policy makers and health service providers often give little recognition to the vast savings they achieve through dementia care services being provided free of charge by family (and friend) caregivers [17]. A European study evaluated the experiences of family caregivers across five European Union countries and found that caregivers looking after an individual with severe dementia typically spent in excess of 10 hours daily in caring tasks and one-third of all caregivers devoted 14 hours or more each day to caring tasks [15]. The research also revealed that while it is commonly understood that cognitive problems – memory and confusion- are known to be associated with the onset of dementia, many carers were unaware of the behavioural symptoms such as aggression and personality changes which often occur and can cause the person with dementia to behave out of character; and create a great deal of stress and challenge for caregivers [15].

Among some researchers and policy analysts there has been a call for a "fundamental reorientation towards caregivers and caregiver supports… beginning with viewing caregivers as a critical health human resource in a system that [increasingly] depends on their contributions in order to function" ([17], p. 103). This re-orientation recognises that with a growing older-adult population, the health system in many developed nations will increasingly be reliant upon family members to provide the first level of care for people living with dementia.

Peter Stoltz and colleagues [18] reviewed the international literature identifying the needs of family members who care for an elderly person living at home (the majority of studies involved family members caring for a dementia-affected person) and found strong evidence showing that family-based caregivers: have a variety of learning needs about their family member's condition; wish to network in groups with other caregiver peers, for social and/or learning needs; desire periodic respite from their caregiving responsibilities; often experience a range of negative emotions associated with their caregiving responsibilities – typically feelings of burden, stress and worry; fear social isolation both for themselves and their family member.

support services. The home support participants were found to have spent fewer days in hospital

A narrative review was undertaken in 2015 of four prevalent models of home support for community dwelling persons living with dementia, The four models included: Case Management (may increase use of community-based services and delay institutional care; Integrated Care (results in greater use of community-based services, decrease in hospital days, however, the clinical effects are unknown); Consumer Directed Care (known to increase satisfaction with services and have little effect on clinical outcomes); Restorative Home Care models research has demonstrated that an individual's functions and quality of life improve, however, there is very limited research that has included people living with dementia. It was also noted there is a dearth of research that compares the outcomes and impact of models of care for people

Evaluations on restorative home support services have identified advantage in providing timely interventions, education and assistive technologies to encourage older people to

Globally, care from relatives, including partners, children and extended family provides the foundation of support for people living with dementia [15]. Research has identified that caregivers looking after a family member with dementia are in most need of extra support [16].

Some researchers have contended that policy makers and health service providers often give little recognition to the vast savings they achieve through dementia care services being provided free of charge by family (and friend) caregivers [17]. A European study evaluated the experiences of family caregivers across five European Union countries and found that caregivers looking after an individual with severe dementia typically spent in excess of 10 hours daily in caring tasks and one-third of all caregivers devoted 14 hours or more each day to caring tasks [15]. The research also revealed that while it is commonly understood that cognitive problems – memory and confusion- are known to be associated with the onset of dementia, many carers were unaware of the behavioural symptoms such as aggression and personality changes which often occur and can cause the person with dementia to behave out of charac-

Among some researchers and policy analysts there has been a call for a "fundamental reorientation towards caregivers and caregiver supports… beginning with viewing caregivers as a critical health human resource in a system that [increasingly] depends on their contributions in order to function" ([17], p. 103). This re-orientation recognises that with a growing older-adult population, the health system in many developed nations will increasingly be reliant upon family members to provide the first level of care for people living with dementia. Peter Stoltz and colleagues [18] reviewed the international literature identifying the needs of family members who care for an elderly person living at home (the majority of studies involved family members caring for a dementia-affected person) and found strong evidence showing that family-based caregivers: have a variety of learning needs about their family member's

and more days at home over a subsequent 12 months following the intervention.

living with dementia and their family/caregivers [14].

148 Cognitive Disorders

develop increased levels of independence and activity [5].

**1.2. Caregivers supporting someone living with dementia**

ter; and create a great deal of stress and challenge for caregivers [15].

While caregivers valued the external support provided to them and their dementia-affected family member, many studies revealed that caregivers often experienced support services has been 'given' to them, rather than being negotiated and individually tailored to meet their needs; and while such forms of support were often well intended, it was not always appropriate for the cared-for the person's or caregiver's needs [18].

Similar findings were identified by Siobhan Reilly and colleagues [19] from the Cochrane Collaboration in their review of the dementia research literature commenting that:

"Services are often organisationally highly fragmented, coming from a wide range of sources both formal and informal, including from health and social care services, family, friends and neighbours. As a consequence the picture of resource provision for the older person may be a series of piecemeal contributions from a range of different services, with no one having an unambiguous responsibility for taking a broader view of need beyond their own particular remit. Assessment and care plans tend, therefore, to be 'service oriented' rather than 'client-centred', piecemeal and not holistic, defining needs in terms of available services of care rather than individual problems" ([19], p. 3).

A Canadian study evaluating the experiences of family members caring for a person with dementia also identified a need for an integrated continuing care model that included the person living with dementia and the caregiver as partners in care. The researchers reported that the provision of appropriate and consistent support services – assistance with personal care, meals, homemaking and respite – were very influential in extending the period of time that family caregivers could maintain care within the family residence [20].

A recent Irish review explored the concept of respite care and how it relates to people with dementia and their caregivers. It is widely recognised that respite gives the carer a physical break and consequently a mental break from the person living with dementia. The researchers noted that respite can be viewed as both as service and an outcome. They argued there is a lack of clarity around the concept of respite and it is currently only understood in relation to the carer experience and consequently that this is potentially harmful to both planning and delivery of person-centred dementia care. They further suggested that a name change from respite care to restorative care in order to highlight the significance of offering mutual, individualised health and social services that will enhance care relationships [21].
