**1.1. Restorative care**

number of people affected by dementia is anticipated to rise exponentially as the world population ages. Global improvements in health care and living standards have contributed to people living longer, and this represents a significant challenge to health and social services [1]. A recent World Alzheimer Report noted that in high income countries approximately half the people living with dementia receive a diagnosis and in middle and low income countries under 10% receive a diagnosis [2]. With increased awareness of dementia in communities, it is likely to lead to more cases of dementia diagnosis. It is estimated that 46.8 million people worldwide are living with dementia and that this number is likely to increase to 131.5 million in 2050 [2]. Due to limited resources and policy development, the provision of services for individuals living with dementia in many developing countries is minimal. In contrast, many developed countries have formulated, or are in the process of developing, policies and services aimed at supporting the needs of individuals living with dementia and their family/caregivers. While the management of dementia care varies globally, home-based support is typically a leading component of government policy as it is viewed as a cost effective support measure [3, 4].

Dementia is not a single disease, it is caused by a variety of brain illnesses that affect memory, thinking, behaviour and ability to perform everyday activities, and is usually of a chronic progressive nature [3]. Dementia is a costly condition from its social, economic, and health dimensions, and numerous nations are formulating strategies such as home support to man-

Although the levels of provision and nature community-based services vary between nations, the challenges faced by each government in maintaining and improving services, in the context of a rapidly ageing population and changing expectations, remain similar [5]. Community-based services for people living with dementia include home support services offering assistance with domestic tasks, meals, transport, medication administration, and personal care; day programme services that provide leisure, learning and respite activities; support groups in dementia education initiatives; and range of medical support services. International research reveals that the provision of quality community-based services for

Traditionally, home support services for older adults have often emphasised well-meaning dependency model service provision and encourage maintenance and support only [7]. Under this model, as support workers and allied health staff held a task orientated attitude that prioritising getting the job done and doing as much as they could for the client. The service orientation often lacked an emphasis on the promotion of healthy daily routines, exercise, social interaction, autonomy and assisting individuals to undertake the own daily needs [5]. Recent progressive changes in home support practices are, in part, grounded in the developments that occurred over the past three decades in the care of people living with disabilities [8]. Today the concepts of normalisation, engagement with the community, and empowerment, permeated approaches to the management of people with intellectual, psychiatric and physical needs. A number of developed countries propose that home support services catering for the needs of older adults required a similar progressive change of attitude [8] and following this trend a number of new models of care have been developed. Examples of home support models focused on optimising client functioning and independence, is an integrated

age this development such as the provision of home support [1].

146 Cognitive Disorders

people with dementia can postpone the need for institutionalised care [6].

International research assessing the impact of restorative care programmes has largely been undertaken in the United States of America (US) and focused upon older adults living within a residential care settings – the results have identified a range of positive outcomes for participants including maintaining and improving functional outcomes, improved quality of life and independence, and psychological gains; a range of positive outcomes for caregivers have also been identified including increased satisfaction and knowledge of restorative care, and increased outcome expectations [12].

A small number of international studies have investigated the impact of restorative care within a community setting. An Australian-based study compared the outcomes of 100 older adults aged 60+ years (without a dementia condition) who participated in a short-term restorative home-care programme directed at optimising functioning, promoting healthy ageing and encouraging the self-management of chronic diseases; with 100 older adults who received the usual home-care services [8]. Research participants were interviewed at the commencement of the programme and at a 3 month and 1 year follow-up. The research found that individuals participating in the restorative programme showed improvements on all personal outcome measures compared with the control group. The researchers commented that "participants who received restorative home care showed greater improvement in their self-care, home management and mobility scores" ([8], p. 198).

A US-based study paired 691 older adults aged 65+ years, without a severe cognitive impairment, and receiving a restorative home care programme through a single restorative staffing unit; with 691 similar aged/gendered adults receiving the 'usual' home care programme across five other staffing units [11]. All support staff (restorative and non-restorative) were employed by the same provider. The research identified that older adults participating in the restorative home care programme were significantly more likely to remain living at home and to have a reduced likelihood of visiting an emergency department. The restorative care participants also showed higher levels of self-care, home management and mobility. The researchers commented that the success of the restorative model was supported by an "enhanced sense of teamwork and improved coordination among the home care staff, the reorientation toward maximizing patients' functional independence, and the inclusion of patients, families and home care staff in setting goals" ([11], p. 2104).

A United Kingdom (UK) based study evaluated the impact of a home support programme that incorporated restorative care elements [13]. The experiences of 29 older adults recently discharged from hospital and supplied with a follow-up 6 week restorative home support programme, were compared with a control group of 25 (similar) older adults receiving the conventional community support services. The home support participants were found to have spent fewer days in hospital and more days at home over a subsequent 12 months following the intervention.

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.

Effective Restorative Home Support for Older People Living with Dementia and Their Caregivers:…

http://dx.doi.org/10.5772/intechopen.73165

149

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 appropri-

Similar findings were identified by Siobhan Reilly and colleagues [19] from the Cochrane

"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

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

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, indi-

The Canadian study also identified that the high turnover of professional and non-regulated home support personnel could often lead to an inconsistency of service provision [20]. Other issues affecting the standard of service provision provided by support staff included limited training, lower wages than colleagues in an acute care settings, few benefits and limited

Collaboration in their review of the dementia research literature commenting that:

ate for the cared-for the person's or caregiver's needs [18].

services of care rather than individual problems" ([19], p. 3).

that family caregivers could maintain care within the family residence [20].

vidualised health and social services that will enhance care relationships [21].

**1.3. Paid home support staff working with someone living with dementia**

supervision [22].

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

Evaluations on restorative home support services have identified advantage in providing timely interventions, education and assistive technologies to encourage older people to develop increased levels of independence and activity [5].
