Experiences of older people with dementia: Homecare enablement to support transitions in daily life at home

Abstract

Introduction

The majority of people with dementia live at home. Homecare enablement services are considered an important short-term intervention, using a person-centred approach. Little is known about people with dementia’s perspectives of the services. This study aimed to explore the users’ experiences.

Method

Following ethical approval, participants who had recently used homecare enablement services were invited to participate in two semi-structured interviews through homecare enablement services’ teams within a local authority. Interviews focused on people with dementia’s narratives of the impact of homecare enablement services on their daily functioning. Overall findings were taken back to the participants at the follow-up interviews for member checking. Interviews were digitally recorded, transcribed and analysed using grounded theory.

Findings

Sixteen participants with dementia and eight carers took part. Three key themes were revealed: the meaning of enablement in later life; homecare enablement services as instrumental to support transitions in daily life; and enablement through activity engagement in everyday life.

Conclusion

The scope of homecare enablement services is evolving to meet the requirements of the Care Act of 2014 and National Institute for Health and Care Excellence guidelines. Services’ improvements and redesign must consider the viewpoints of people with dementia.

Keywords

Dementia agency enablement homecare ADL perspectives of people with dementia occupational therapy

Introduction

Dementia is a global public health priority. In the United Kingdom (UK), it is estimated that the number of people with dementia (PwD) will be around 2 million by 2051 (Alzheimer’s Society, 2019). Two-thirds of PwD live at home (Department of Health, 2013) and are cared for by family carers (Department of Health, 2008). Many are being supported by homecare services that are provided or commissioned by local authorities (LAs) (United Kingdom Homecare Association, 2015). This situation presents challenges to social care systems in supporting PwD’s ability to live an active and healthy life at home. Such challenges include, for example, increasing the complexity and scope of PwD’s care need and support in later life, funding cuts to adult social care in the face of austerity and growing pressures on family carers in their caregiving role (Alzheimer’s Society, 2018; Care Quality Commission, 2017; Knapp et al., 2013). Moreover, there is an increasing acknowledgement of the need to listen to the voice of PwD if community-based care is to be effectively delivered (Alzheimer’s Society, 2017; NHS England, 2019). Homecare enablement services (HES) have been increasingly adopted as the main mechanism to provide a short-term intervention (usually lasting no longer than 6 weeks) to support adult service users, including PwD, at home (Glendinning and Newbronner, 2008). This paper discusses the experiences of people with dementia who have used such services.

Literature review

Dementia is one of the main causes of disability and dependency later in life (National Institute for Health and Care Excellence, 2015). It describes the brain disorders that can be caused by a number of acute and progressive illnesses that affect memory, behaviour and the ability to perform everyday activities, and is not a normal part of ageing, although age is a strong risk factor (World Health Organization (WHO), 2017).

Over the past decade, there has been a shift of UK government policies in dementia care towards the need to treat PwD as individuals with a ‘unique identity and biography’ (National Institute for Health and Clinical Excellence, 2006: 71). One key influence is shown by Kitwood’s theory of dementia, which contends that, despite cognitive loss, individuals can continue to experience a relative state of wellbeing when a good quality of care is available (Kitwood and Bredin, 1992). PwD can be supported through a personalised enabling approach. Government policy has been to support PwD living well by still engaging actively in their daily life as long as they possibly can, through a coordinated, personalised approach during the course of dementia. In doing so, it is believed that PwD go into care homes later (National Institute for Health and Care Excellence, 2015; NHS England, 2017). Such a personalised approach is in alignment with best practice principles including person-centred (drawing on the person’s strength and considering declining abilities) (National Institute for Health and Care Excellence, 2018) and non-pharmacological (recognising the benefits of alternative approaches to address behavioural and psychological issues) intervention (Kales et al., 2015). Fundamental to this assumption is that an individual with dementia has a self and a range of psychosocial needs (Kitwood, 1997; Sabat and Harre, 1992). The threats to one’s sense of self and personhood (self-esteem) have disabling effects on those individuals (Kitwood, 1997).

The development of HES resulted from governmental initiatives in social care, particularly Putting People First (Department of Health, 2007), Transforming Adult Social Care (Department of Health, 2009) and the Care Act (Department of Health, 2014). However, the term ‘enablement’ is not well defined, being used interchangeably with re-enablement, restorative care and recovery, depending on the focus of enablement services. Generally, the services aim to encourage service users to participate actively in the development of their own care plan for independence (Glendinning and Newbronner, 2008). LAs consider such an approach as an alternative to traditional domestic homecare because the latter has been criticised for fitting the users into services that led to them becoming over-reliant on care packages (Francis et al., 2011; Glendinning et al., 2010). Central to the enabling approach is the need to focus on improving or extending the ability of the users so as to support them in achieving identified goals of their own choice (Glendinning and Newbronner, 2008), and also to stress the need to empower people to do things for themselves, rather than having things done for them (Jones et al., 2009). The role of occupational therapists is recognised as crucial in the implementation of HES, including staff training (Department of Health, 2014; Francis et al., 2011; Social Centre for Institution of Excellence, 2011). However, there is no consensus on how enablement could be achieved (Cochrane et al., 2016; Parker, 2014; Whitehead et al., 2013). HES are delivered using different methods, based on the local needs and resources available, depending on local commissioning decisions and models of health and social care services. For example, many HES are provided or commissioned by LAs, whereas some are joint-funded by the National Health Service (NHS) and LAs. Some LAs deliver HES in-house by training their homecare staff to adopt an enablement approach to homecare. Some HES are part of an inclusive service, that is, they are available to adult service users who are referred for homecare services and meet the eligibility criteria for the service; other HES focus on supporting service users who need hospital discharge services. Moreover, HES often have access to occupational therapists, although some HES have occupational therapists based within their teams (Glendinning et al., 2010). Generally, HES are seen as a new approach to homecare provision because they aim to enable independency through a person-centred method, within a timeframe. Evidence of the effect of HES on PwD is limited, although such services have been shown to be beneficial to many people with early to mid-onset dementia (Cochrane et al., 2016; Glendinning et al., 2010; Pitts et al., 2011; Poulos et al., 2017). Research has pointed out that if enablement services are to be effective, there is a need for a clear understanding of users’ views, needs and preference (Dawson et al., 2015; Trappes-Lomax and Hawton, 2012), as such information is crucial to informing service commissioning for enablement services (King’s Fund and Nuffield Trust, 2012). Moreover, there is a lack of evidence on the most effective way to support PwD living at home (National Institute for Health and Care Excellence, 2015). This research aimed to explore the experiences of PwD who had used HES.

Method

When little is known about the topic under study, a grounded theory (GT) approach can be adopted to understand the social process involved (Holloway, 1997). A GT method was relevant to this study, providing a systematic approach to study processes, actions and meanings (Charmaz, 2006; Strauss and Corbin, 1998). This research addressed the processes by which PwD experienced HES within an LA. Using this GT approach, the researcher (author) listened to PwD’s narratives on their actions, and the meanings they attributed to their actions, relating to the topic under study (Charmaz, 2006; Strauss and Corbin, 1998).

Purposive sampling was used with participants recruited via nine LA homecare enablement teams (HES), delivered ‘in-house’. The HES was available to adult service users who were referred for home care and considered to have the potential to benefit from an enabling approach to maximise independence in the community. Generally, each team consisted of a locality organiser, supervisor and others, for example enablement support workers supported by specialist occupational therapy interventions with oversight by a senior occupational therapist. The occupational therapists offered daily support to team members, including decision-making on eligibility criteria for the services, complex occupational therapy assessment and interventions.

The participants were people who: (a) had a confirmed or suspected diagnosis of dementia who lived at home (as indicated in the referral for HES), and (b) had recently been supported by a HES team. The justifications for these criteria were that such people: (a) would have been identified as suitable for HES and were likely to have been working on strategies to enhance their coping abilities with everyday functioning, and (b) would have been assessed as capable to give informed consent following a mental capacity assessment. Exclusion criteria included those people who were unable to: (a) consent to participate in the research due to a decline in health circumstances during and after the HES, or (b) communicate freely due to other medical conditions, for example stroke. In the information sheet, participants were advised to discuss with carers the information about the nature of the research and to invite them to join in interviews, as their supporters, if they preferred. In these cases, the carers gave consent to join in the interviews and were aware that this research focused on seeking the voice and experiences of PwD in the context.

Following approval by the management governance and the University Research Ethics Committee, participants were invited verbally and in writing to participate in two semi-structured interviews (initial and follow-up). Once the potential participants had given written consent to be contacted by the researcher, the researcher contacted them to arrange interviews. Sixteen participants with dementia took part in their own home (eight male, eight female, aged from 70 to 90 years old). The participants varied in gender, age, relationships to carers, types of dementia and co-morbidities. This allowed the generation of diverse relevant data and facilitated constant comparisons of concepts and categories, as discussed earlier (Strauss and Corbin, 1998). Eight carers were invited by the participants to participate in the interviews (three male, five female; five spouses, two daughters-in-law, one son). Generally, it was noted that carers were keen to encourage the participants to talk about what mattered to the participants themselves even though carers disagreed with them at times. The presence of these carers provided a rich context for data being collected to understand the social context of PwD. This, in turn, facilitated the researcher’s further understanding of the interdependent nature of PwD and their carers, and the meanings they attached to such a relationship in a social care setting. The detailed perspectives of the carers are beyond the scope of this paper. The first interview explored how PwD perceived the processes of being involved in the HES, including strategies developed and outcomes, together with their reflections and feelings. Interviews lasted between one hour and one hour thirty minutes. Follow-up interviews were conducted for member-checking (Charmaz, 2006). The researcher took issues (emerging concepts) that had been identified from the analysis of around two to three interviews back to each participant for their comments. All interviews were digitally recorded and transcribed verbatim. Each transcript was read, re-read and coded to develop concepts further by constant comparison (Strauss and Corbin, 1998).

During the research process, data collection and analysis were ongoing. The researcher used the constant comparison method to compare the incoming data/concepts for their similarities and differences, as well as relationships to one another. This iterative analysis enabled the researcher to maximise opportunities to generate variations among concepts, as well as to check and refine concepts that resulted in the development of categories that are rich with meaning (Charmaz, 2006; Strauss and Corbin, 1998). Moreover, sets of coding procedures were used for analysis, including: (a) line-by-line open coding provided a basis for constant comparison and the development of concepts from emerging data, allowing the study of actions and events within the data; (b) axial coding, which explored variations in data patterns and the further development their characteristics; (c) selective coding for further conceptual and focused analyses at later stages of the interviews/research. This analytical process was ongoing until saturation of relevant concepts was reached (Strauss and Corbin, 1998).

A steering group, consisting of key stakeholders including a service user, was set for periodical meetings in order to offer advice and opportunities to discuss emerging issues and findings throughout the research process.

Rigour was maintained using various guidelines to maximise the trustworthiness. For example, firstly, the researcher adopted a reflexive approach to keep an open mind and avoid preconception of learnt concepts (Charmaz, 2006). She also maximised her theoretical sensitivity through measures such as conference presentations (Charmaz, 2006; Strauss and Corbin, 1998). Moreover, she sought alternative interpretations of emerging concepts through discussions with members of the research group at steering group meetings. Secondly, the researcher regularly sought out ‘negative instances’ or ‘contradictory cases’ (Mason, 1996: 94) to compare the similarities and differences between existing data and contradictory data so as to develop further the variations of the concept (Charmaz, 2006; Holloway and Wheeler, 2002). Thirdly, memos were used to organise retrievable data for sorting and cross-referencing in a systemic manner (Charmaz, 2006; Strauss and Corbin, 1990, 1998).

Findings

This paper focuses on three key themes that emerged from the voices of participants with dementia, discussed below. The first theme, ‘meaning of enablement’, revealed how participants perceived the concept of enablement, which had important meaning to PwD with multiple chronic illnesses in later life, in terms of maintenance of a continuing sense of agency and the ‘able’ self. The second theme, ‘Homecare Enablement Services as instrumental to support transitions’, discusses how, following significant life-events, many participants valued the HES as instrumental in supporting them when in transition back to daily life routines and reducing the burden on their family. The third theme, ‘Enablement through activity engagement’, discusses how PwD welcomed a range of strategies. These were used for enabling their activity engagement in daily life, although it was not without challenges. Pseudonyms are used throughout.

The meaning of enablement in later life

Most participants had a confirmed diagnosis of dementia in recent years, including Alzheimer’s diseases, vascular-type and Lewy-body. Almost all of them also had multi-morbidities, for example diabetes, chronic obstructive pulmonary disease (COPD), Parkinson’s disease, heart conditions, chronic pain, suspected cancer, sensory impairments and mobility difficulties, that had a disabling effect on their ability to manage their daily routine activities including personal care, household management and recreation. Despite these challenges, many participants talked about the meaning of enablement and how they strived to maintain a sense of the continuing self and agency in daily situations by enabling themselves.

Striving for self-reliance

Despite memory difficulty and increasing disability, participants expressed the desire and need to seek for self-reliance and be part of the decision-making process for issues that mattered to their daily life. Mary said, ‘enablement for myself… means being capable of coping with most things in life yourself. But also having the sort of mind where you don’t, and having the right people around you, that’s important’. There was a strong sense of being their own agents to take control and adapt to ongoing changes through self-initiating actions.

Adjusting to ongoing changes

Participants talked about how, in the face of adversities and life-changing events throughout decades, they continued to adapt and adjust their attitudes and enabling strategies so as to carry on with life. Strategies adopted included acceptance, positivity, resilience and laughter. George said, ‘just to get on with life as it hits you… You have to be resilient and you take life as it treats you… we have to look at ourselves with a sense of humour’.

Keeping active

Finding ways to keep themselves mentally and physically active were important. In doing so, they attempted to prevent themselves from rapid deterioration in health status. Richard said, ‘If we can keep well and keep moving and keep doing things, it’s good for us and it’s good for the people we’re dealing with… Well, I try to live as independently as I can’. There was a sense that they wished to keep away from becoming a passive care-recipient to their family. Nevertheless, for many, with increasing risk and fear of falling, they lost confidence in their functional mobility and gradually adopted a sedentary lifestyle to avoid trips and falls.

Going out for stimulation

Those who were able to go out (alone or with support) took regular trips outside the house, because going out offered them a distraction from their worries and gave opportunities for self-reflection and learning. Tom said:

I go out and walk a lot… While you’re actively engaged in doing something for yourself, you can also look at life around you… you take notice and you wonder to yourself, ‘what would I do in that situation?’ … If you don’t reflect, you don’t learn.

Having a meaningful routine with purpose

With family support, many participants utilised sets of routines as their memory prompts for their daily activities, such as having a schedule to remind them to prepare lunch and take medication. This can be illustrated by Elise, who has vascular dementia with severe mobility problems and constant pain in her joints, and who has developed a routine to prevent herself from dehydration and falls. She said:

I put things in the places, and I know I’ve got three things to drink from there…. It makes me keep drinking, which is very important. It’s an effort to pick that up sometimes… I think it’s very important to work out a system.

Taking risks

When participants perceived something of great value and importance, they would act on it even though they were aware of the risk involved. Sue said:

With the weather, being hot and all this rain, I find it very hard to walk up the garden and not pull up weeds… my daughter was so cross when I did this… and her attitude was, ‘I told you to wait until you have someone come to help’ … Well, she can’t tell a gardener not to go up the garden… I said, ‘I can’t wait until I got someone because when I fell last time I broke one of my little specimen trees. I need to have it bandaged up’. But with two sticks, you’ve got to let go of one in order to do that… and then you’re vulnerable because you will fall… that is where I’m stupid.

Enhancing interdependency

Participants were keen to maintain their sense of self, reciprocity and being able to continually engage in daily activities as far as practical. Nevertheless, over time, they gradually relinquished some of the everyday tasks and decision-making responsibilities through negotiations. Antony said:

As you can look around [the house], everything’s in a mess. My children had been here to tidy up the mess because they think I need help… But, the mess will never go away because I am the one who creates the mess. I mean, I have to use my abilities and keep doing what I can to stay sane and not screaming. …I want to keep them happy and I know they’re happy when they’re looking after me.

Participants aspired to work on strategies to enable themselves and, at the same time, seek for cooperation and interdependent relationships to support them at home. This reflected that enablement was a way of living to maintain a continuing sense of self and agency, through engaging in meaningful ‘doing’, within a trusting relationship. The process became more complex and challenging as their dementia and physical status deteriorated.

HES as instrumental to support transitions in daily life

The majority of the participants were transferred to HES following a period of hospitalisation. Some were referred to the services by their families and community-based professionals following a personal crisis such as a slip or the recent death of a spouse. Many perceived the provision of HES as instrumental to: (a) supporting them in transition to their ‘usual’ daily routine at home; and (b) offering support to alleviate burden and strain on their family.

Transition to usual daily routine

For many participants, services that aimed at enabling them to return to, or remain in, a familiar environment were a welcome option as this was crucial to their sense of hope and belonging. This was particularly important for those who believed that admission into a care home would start a journey of meaningless life. Lilian said, ‘well, the care homes… they sit round the room, half of them with their backs to the windows and the nothingness… sitting by somebody who couldn’t talk or didn’t want to talk to them’.

At times of health and personal crisis, many participants valued the HES as they made it possible for them to stay at home, especially when they experienced a real threat to being institutionalised. A carer, Lucy, said:

When my husband was in the hospital… the doctors said to us, if he doesn’t come through the weekend we are going to do palliative care… But he pulled through… and then they sent him home but only on the care plan [Enablement].

Many participants felt that the HES supported them to be an active partner in the intervention process, leading to a sense of security, achievement and stability. Stephen said:

Coming out of the hospital… I felt I could do more on my own at home…. Another day I can get up and I’ll walk right the way through… I can do it by myself… I do feel safer yeah.

Participants welcomed the HES that aimed at doing things with them, rather than doing things for them. Nevertheless, it appeared that the participants’ motivation to engage with the services was negatively influenced by staff approach when they failed to listen to participants’ viewpoints and to enable them to understand their care plan. Some felt they were being ignored by staff who seemed to spend a lot of time writing reports rather than offering time for a meaningful conversation with them. George said:

They [staff] can study me as much as they like. But if they think that they are going to get anything from me without me understanding it, they’re wrong…. All they do is come in and write down and observe what the person before them wrote down.

Instrumental in offering family support

Many participants were willing to accept the HES because they considered the acceptance of the services as a way to ease worry for their family. Many acknowledged that their family had their best interests at heart, even though some considered their family over-protective and over-concerned at times. There was a sense of reciprocity, caring and maintaining a harmonious relationship with family. As Antony said: ‘I’m happy to go along with it [enablement care package]… I do realise now, at this stage in my life, that there are things that I can’t do for myself and I let them organise everything’.

It was noted that some carers were sceptical that PwD had been ‘sent’ home with the HES inappropriately, without sufficient assessments and resources in place. This resulted, in some cases, with the individuals being readmitted to the hospital shortly after discharge from hospital. In other situations, carers felt that the HES discharged their relatives too early due to an over-reliance on participants’ self-reporting in the assessment process. This resulted in family feeling frustrated and unsupported.

Enablement through activity engagement in everyday life

Continuing activity engagement was considered important for many participants. Many were frustrated that their ability and confidence to continue with their taken-for-granted everyday activities had been adversely affected by ill health and memory. They valued the opportunity to re-engage in their daily activities through a range of approaches offered by the HES, as discussed below.

Re-engaging through re-learning skills and routine in daily life

Many participants talked about how they were supported to re-engage in various activities by re-learning skills and re-developing routine in daily life. In doing so, they felt that they became more positive and hopeful by reaching their optimal level of functioning and regaining a sense of identity and purpose. David said:

When I came home from the hospital, they [the enablement workers] came in to help me wash and dress… Well now I get up in the morning, wash myself, go in the bathroom, I clean myself… my wife used to have to help me (when no one was around) but I can’t put her in that position… I said to myself… I must do something about it, pull your socks up, be a man… you know I can stand up… and I can walk. I'm still not a hundred percent… I can walk to the dustbin.

An issue raised by many carers was, despite the fact that the range of daily activities that participants still engaged in were wide-ranging, the HES appeared to enable mainly personal care activities. Also, both participants and their families often were unsure about the scope of the services.

Re-engaging through regaining functional mobility

Mobility problems and frequent falls were common. Participants found the process of re-learning how to walk challenging without appropriate intervention. Chris said:

I think what a lot of people don’t realise is… learn[ing] to walk again with my walking frame… [was] a big thing… And the older you get, the harder it is to learn, but I don’t give in… I feel confidence that I can do it myself.

Often, participants and family carers were keen to be referred for rehabilitation; however, they found that the services were usually short-term or had a long waiting list.

Re-engaging through supporting the acceptance of changes

With increasing needs to adapt and adjust to ongoing changes in daily life, participants found the process of adapting difficult, including acceptance of external equipment and home adaptation for support. Some participants appreciated that occupational therapists had the knowledge and skills to enable them to accept and make changes in difficult circumstances. Mary said:

Months, months. I was falling down stairs… an occupational therapist sent a man along to put up grab rails … eventually they suggested I’d to move the bed down…. I used to creep up after dark upstairs… I’ve got to learn that the downstairs is now my home… I can still maintain some independence.

Re-engaging through facilitating social interaction

Some participants had been referred to a day centre for socialisation. Despite being sceptical about the potential benefits of the day centre at first, many were surprised by the potential benefits of attending the centres. Gill said, ‘it’s opened so many doors, it really has… Well, it’s not just sharing yourself with staff, it’s sharing yourself with younger members of the group from the day centre… um, I can share and benefit them by my experience’.

Some kept an open mind to trying new services so as to make contributions to others. However, many participants also talked about the negative experiences of attending the day centre when they felt that they were treated solely as a passive care-recipient and felt devalued by the atmosphere.

Discussion and implications

The aim of this paper was to discuss how people with dementia perceived the effects that the homecare enablement services had on their everyday living skills following a recent input from the services. The discussion drew on the concept of enablement in occupational therapy practice, in which practitioners support individuals to explore and maintain balance in their everyday activities so that goals become achievable (Creek, 2003). Through engagement in occupations, individuals are enabled to gain a sense of meaningfulness through the process of doing and being (Hammell, 2004; Wilcock, 1998) and maintain a sense of agency (Christiansen and Townsend, 2004). Moreover, this study also built on Kitwood’s theory of dementia, stating that the relative wellbeing of the individuals can be adversely affected by not only neurological impairment but also the lack of appropriate support for their psychosocial needs: identity, occupation, attachment, comfort and inclusion (Kitwood, 1997). Failure to address such needs may lead to the development of excess disability, indicating that the person’s level of functioning is less than one would expect on the basis of the actual level of brain disease (Brody et al., 1971). This in turn may trigger signs of ill-being such as apathy, unresponsiveness and anger.

This study showed insights into how PwD perceived the meaning of enablement. In the face of memory decline and vulnerability, they continued to fight for maintaining their sense of the ‘able’ self and continuing identity, through exerting their agency and autonomy within the context of engagement in their activities of daily living (ADL) in their home environment. They lived by their long-standing values and continued to utilise their strengths and resilience the best they could in order to cope with challenges and adversities. Some PwD took risks to engage in daily activities that were valuable to them, showing self-determination. This is consistent with literature that highlights the importance of recognising the assets-approaches and making services dementia-friendly (Rahman and Swaffer, 2018). This study provided further insights into the factors of how PwD, over time, exert their agency to relinquish some decision-making and responsibilities to their carers (especially family) in such a way that they still maintained a sense of being in control and interdependence as far as practical. Participants often acknowledged how ‘lucky and fortunate’ they were because their family were able to offer them support and acted as their ‘second memory’. Such processes can be described as collaborative agency (Bandura, 2006: 165), in which individuals recognise the importance of utilising their collective capabilities and interdependent endeavours so as to achieve a desired goal. This highlights the importance for practitioners of balancing the tensions between the need to promote the independence of PwD against the need to support the enabling role of family carers in their caregiving situations. In this study, family carers were frustrated that they were often ignored by staff involved throughout the care planning and left to deal with the everyday management. It is crucial that, if person-centred dementia care is to be adopted fully in a home setting, practitioners work with family carers in order to help them understand unfamiliar activity patterns and thus develop relevant coping strategies (Chung et al., 2017). Otherwise, families may misunderstand the patterns, viewing them as irrational and irresponsible (Chung et al., 2008), which could be detrimental to the caregiving situations.

Another significant finding for practice was that many PwD who were referred to HES experienced many significant life transitions associated with health issues. This study echoed a report that highlighted the need for health and social care services to be adapted so as to meet the complex care needs of older people with higher levels of dependency, including dementia and multi-morbidities (Kingston et al., 2018). This study showed that dementia and chronic illnesses impacted negatively on older individuals’ abilities to carry out ADL. It is crucial to carry out appropriate assessment to ascertain individuals’ abilities before interventions are implemented to maximise ADL performance, as PwD vary greatly in their capability of related skills and performance, depending on the underlying pathologies and levels of disabilities in cognitive, physical, behavioural and emotional areas (Mlinac and Feng, 2016). However, carers in this study were critical that: (a) ADL were mainly assessed through the self-reporting of PwD without performance-based measures; (b) many staff involved did not seem to understand the complex ADL needs of PwD resulting from dementia combined with other illnesses; (c) there were limited rehabilitation services for, for example, functional mobility, falls and fear for falling. This study supported the National Institute for Health and Care Excellence guidelines (National Institute for Health and Care Excellence, 2017), highlighting the need for staff within re-enablement services to work across organisations so as to coordinate review and reassessment.

The findings highlighted that PwD (and some of their carers) appreciated the process of regaining skills and confidence through re-engaging in a range of ADL, which, in turn, led to a sense of safety, self-respect, achievement, belonging and hope for the future. This reflected the importance of meaningful activity engagement for PwD. However, this study also found that some PwD experienced challenges that discouraged their active engagement in the HES. For example, staff did not communicate effectively with them about their goals for intervention, and spent significant time writing a report rather than communicating with and listening to them in a meaningful way. Moreover, many PwD (and their carers) thought that HES would only cover personal care, which restricted their opportunities to obtain ‘enablement’ in other aspects of ADL that would be meaningful to their daily life, such as re-engaging in previous interests. Such issues could unwittingly create an environment that is disabling rather than enabling, thereby adversely impacting on the wellbeing of PwD in terms of a sense of agency, social confidence and hope (Kitwood, 1997), and result in the failure to slow down the rate of neuropathological decline in dementia (Kitwood, 1997). This study echoed the WHO’s Global Action Plan on the public health response to dementia 2017–2025, which advocates that care services should offer a range of provisions including not only diagnostic but also rehabilitative, preventative and social support for PwD (WHO, 2017).

It was noted that the continuing engagement in daily activity of PwD was affected by whether they perceived the environment and staff approach as being empowering, offering opportunities for them to ‘share themselves’ and ‘feel dignified’. This in turn enabled them to feel they were contributing and not being stigmatised by their disabilities.

This study also found that care plans were often delivered by enablement workers and reviewed by their supervisors prior to discharge from the HES. Some PwD and carers had met an occupational therapist and recognised their role in the assessment of and advice on major equipment and adaptions. This was likely reflected in the model of HES being adopted by the LA at the time when this study was conducted. This study echoed the findings of a systematic review that examined the evidence of the re-enablement of older people in the community (Pettersson and Iwarsson, 2017; Whitehead et al., 2015), concluding that the roles of specific professional (including occupational therapist) and staff groups within the service were often unclear and that there is a need for further research into this area.

A strength of this study is that the knowledge and insight were grounded on the PwD’s narratives regarding the impacts of HES on them. This adds to the existing knowledge about understanding the needs and experiences of PwD and how they perceived themselves as active agents of the enabling process in everyday life. The findings contribute to the debate around the question of involving PwD in research processes (Morgan et al., 2018). This is important as evidence points out that PwD who were older and with complex needs were being marginalised in intervention research because they were excluded from many studies (Livingston et al., 2017). The findings of this study have implications for practitioners, service providers and commissioners to facilitate the development of effective strategies for assessment and interventions in order to enable PwD to achieve the optimal outcomes, in the most cost-efficient way.

There are methodological issues that limit transferability, for example all participants were older PwD, hence the findings may not be applicable to those with young onset and those who do not experience other co-morbidities. The PwD might not represent the type of support provided by services/staff in different LAs/regions using different organisation formats with different funding arrangements. The findings may or may not be relevant to this wider population due to the different contexts (such as team dynamics and organisational culture) involved. Nevertheless, it is hoped that the findings contribute to a deeper understanding of PwD’s experiences of short-term HES at home. Many participants acknowledged that it was helpful for them to talk about their experiences.

Conclusion

Older people with dementia are vulnerable due to memory decline, illnesses and the effects of ageing, and have complex ADL needs. They have a desire to continue engaging in meaningful activities and to use their remaining abilities. Free short-term homecare enablement services have the potential to support individuals at crucial life transitions within the dementia pathway, promoting their wellbeing at home. The nature of enablement services is evolving to meet the requirements of the Care Act 2014 and recent National Institute for Health and Care Excellence guidelines (2018). Services’ design and improvements must take into consideration when reviewing the viewpoints of PwD.

Key findings

Many people with dementia (PwD) with multi-morbidities are referred to homecare enablement services for short-term intervention. Appropriate performance-based ADL assessments by qualified staff are crucial.

Homecare enablement is instrumental to supporting transitions at crucial life transitions on the dementia pathway; however, the scope of services for PwD is unclear to users and their carers, including the range of benefits of occupational therapy.

PwD value the concept of enablement. They attribute the meaning of enablement to meaningful daily activity engagement, maintenance of a sense of the ‘able’ self, interdependency and collaborative agency.

What the study has added

A generic homecare enablement service model (a one size fits all where services are designed for all adult users) may not be sensitive enough to meet the complex needs of PwD with complex health conditions.

Footnotes

Acknowledgements

My Thanks to the UK Occupational Therapy Research Foundation, Royal College of Occupational Therapists for the Elizabeth Casson Trust Postdoctoral Award to conduct this research. My special thanks to participants, carers and staff from the LA involved, as well as members of the steering group for their advice and support throughout the research.

Research ethics

Ethical approval was obtained from the Faculty of Health and Wellbeing Research Ethics Committee. Ref: 16/FHW/16 004 in 2016.

Consent

All participants provided written informed consent to be interviewed for the study.

Declaration of conflicting interests

The author declared no potential conflicts of interest with respect to the research, authorship and publication of this article.

Funding

The author disclosed receipt of the following financial support for the research. This study, conducted from 2016–2018, received funding via an Elizabeth Casson Trust Postdoctoral Award from the UK Occupational Therapy Research Foundation.

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