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How can health professionals better support caregivers and their loved one who are challenged with dementia to remain in their own home setting?

Marcelane Ballantyne

Introduction

In 2012, the World Health Organisation (WHO) published a report identifying dementia as a priority worldwide. The report aimed to address the stigmatisation and lack of public awareness surrounding this chronic syndrome, by bringing it to the forefront of public health agendas (WHO, 2012). Alongside this, the report identified the significant barriers in providing care to people with dementia and the ongoing effects for those looking after them (WHO, 2012). In New Zealand, supporting caregivers within the community setting is especially pertinent due to an aging population, which estimates to have the number of people aged over 65 years’ double by 2051 (Ministry of Social Development [MSD], 2014; Badkar, & Manning, 2009; Jorgensen, Parsons, Jacobs, & Arksey, 2009).

Having a quarter of New Zealand residents over 65 years of age will likely see decreases in the labour force, but additionally increases in the prevalence of dementia, of which age is the most significant risk factor (Alzheimers New Zealand [ANZ], 2015a; Tobias, Yeh, & Johnson, 2008). The purpose of this literature review is to address whether increasing supports for caregivers at home will give better outcomes of long-term care within a home setting. This is notably significant when it is projected that the number of paid caregivers needs to treble in order to meet the high-level caregiving needs (Badkar, & Manning, 2009). Of the entire adult population in New Zealand, approximately one third provides informal or unpaid care, which has an economic value of an estimated $4.3 million annually (Bunn, Goodman, Pinkney, & Drennan, 2016; Kerse et al., 2016). However, dementia care in New Zealand is still dominated by residential and out of home facilities, despite it being widely documented that people prefer to stay within their own home setting (Jorgensen, Arksey, Parsons, Senior, & Thomas, 2009). This transfer to institutionalised care can lead to caregivers experiencing feelings of guilt, disempowerment and an overall sense of failure (Garity, 2006).

Evidence has shown that from a caregiver’s perspective, a broad skill set is required to assist with everyday activities, allowing the person with dementia to continue living in their own home (Aggar, 2016; MSD, 2014; Badkar, & Manning, 2009). Therefore, precedence for health professionals in New Zealand needs to be on encouraging the 'age in place' strategy, supporting not only the person with dementia, but just as importantly their caregivers. (Kerse et al., 2016). Caregiving can then start incorporating multiple health inputs to provide the caregiver with a challenging, yet rewarding experience, which has the potential to delay institutionalisation of the person with dementia (Aggar, 2016; ANZ, 2015b). With no current cure or treatment able to reverse the brain cell death, a person diagnosed can anticipate a progression of becoming increasingly dependent on others, as their cognition continues to decline over time, a daunting prospect for potential caregivers (ANZ, 2016a, ANZ, 2016c, ANZ, 2015c).

Clinical Issue

During a clinical placement in a level D6 dementia care unit, I took part in two new admissions. The conversations that I had with the caregivers of the client, brought to the forefront the shame and guilt they experienced over having to place their loved one into residential care. In both cases, they felt like they had no other choice due to their inability to meet the needs of their family member. In one instance, the caregiver was a wife now unable to assist her husband in mobilising in the morning, in the other incontinence and medication compliance had resulted in admission. Both caregivers spoke of their desire to have had more education and training on how to overcome these issues so that their family member could have remained in the home setting for longer. While it was clear they felt relief at knowing the burden of caregiving was no longer just theirs to carry, the admission was met with a substantial amount of regret and sadness. From these experiences, questions arose for me, such as:

• Would caregivers choose to keep a person with dementia at home longer if more support was available?
• What nursing supports would caregivers need from within the community and other health settings?
• Are the outcomes more positive for caregivers and dementia clients to remain in home or be admitted into residential care?

The table below utilises the PECOT tool to restructure these broad questions into searchable key terms and a more defined search question (University of Wisconsin, 2017; Whitehead, 2013).

From the information stated above a database search can be performed. The inclusion terms consist of: caregiver, dementia, home or home-based, training or education and nursing. This would ensure that dementia caregivers are targeted rather than caregivers of other illnesses or disabilities. Further refining of the search can be achieved by adding in exclusion criteria. In this case, exclusion terms comprise of: residential, respite and palliative. Residential care and respite are both terms increasingly associated with dementia, by excluding these terms more home and community based articles become relevant. Additionally, palliative caregiving is specialised and often comes with its own unique challenges which can alter outcomes regarding whether a person being cared for can remain at home or requires hospice level care (Escobar et al., 2013). Other criteria that was included in the database search was narrowing the year of publication to 2000-2017 and displaying only articles written in English.

It is relevant to note that on the initial database search, it was restricted to only include articles from New Zealand, however this resulted in no relevant articles being displayed. To identify caregiving needs within a New Zealand context, a search was performed with keywords, caregiving*, education and nursing. Searches were also conducted through the Statistics New Zealand and Ministry of Health websites. After narrowing down the number of journal articles identified by the search terms into the CINAHL and PubMed databases, a more concise and structured question can be formulated.

Does increasing nursing supports for full-time carers’ give better outcomes of long-term dementia care in a home setting?

Literature review

There are many definitions as to what being a caregiver entails. Broadly, it is an individual who undertakes an unpaid care role in an unprofessional capacity, to help support and promote the independence of another (Aggar, 2016; Schulz, & Martire, 2004; WHO, 2006). This often happens within close family or friend relationships, but exceeds what society would depict as normal caregiving hours (MSD, 2014).

In New Zealand, the estimated 400,000 caregivers are more likely to be women and carers will often be older themselves, adding to an already complex and physically demanding role (Kerse et al., 2016; Angelo, Egan, & Reid, 2013). Caregiving can be challenging from multiple pathways; emotionally, physically, financially and socially (WHO, 2012; Brodaty, Green, & Koschera, 2003). The care given to people diagnosed with dementia can be especially complex (Aggar, 2016), and regularly leads to full time specialised care within a residential or nursing home setting (Mental Health Foundation [MHF], 2017). Caregivers face increased physical demands as the care recipient loses their ability to remain independent with mobility, showering and undertaking household chores. Consequently, this can result in poor physical health outcomes for the caregiver, such as ongoing back problems, exhaustion and fatigue (ANZ, 2016c ; Angelo, & Egan, 2015; Gillespie, Mullan, & Harrison, 2014). Additionally, cognitive changes lead to behavioural issues, memory loss and communication deficits for the care recipient, leaving the caregiver feeling isolated and increasingly stressed as the disease progresses (Aggar, 2016; Carers New Zealand, 2015). It is these ongoing and chronic changes, together with limited community and professional support, that can be the catalyst for considering residential care options (WHO, 2012; Jorgenson et al., 2009).

As dementia progresses, caregivers are seen to put their own health needs secondary, a notion referred to as caregiver burden (Aggar, 2016; Kerse et al., 2016; Angelo, & Egan, 2015; Carers New Zealand, 2015; Laing, & Sprung, 2014). Caregiver stress adds to this burden and can develop from numerous pathways, including isolation due to stigma surrounding dementia, the demands of advocating for the care recipient and sacrificing other relationships and employment opportunities to enable adequate care (Ministry of Health [MOH], 2014; WHO, 2006; Gilmour, 2002). Furthermore, caregivers must navigate an often-complicated system of multiple service providers, to gain access to satisfactory support and resources (Aggar, 2016; Angelo, & Egan, 2015). These factors, alongside having to manage complex treatments, gain compliance with medication, and lack of financial support are all barriers to caring for a person with dementia at home (DiZazzo-Miller, Samuel, Barnas, & Welker, 2014; WHO, 2012; Jorgensen et al., 2009).

Therefore, the successful continuation of care at home does seem to depend on the overall good health and well-being of the caregiver (Schoenmakers, Buntinx, & Delepeleire, 2009; Brodaty et al., 2003). Carer’s overcoming caregiving burden has been shown in recent research, with caregivers reporting feelings of pride in their role, where caregiving ultimately brings them sense of meaning, companionship and fulfillment (WHO, 2012). By accessing appropriate support, caregivers can strengthen their connection to the care recipient and feel competent in meeting their needs, therefore, delaying the necessity of admission into residential care (Angelo et al., 2013; Chiao, Wu, & Hsiao, 2015; Spijker et al., 2008). Jorgensen et al., (2009) established caregiving stress as one of the determining factors in early admission into residential care, despite research showing that institutionalisation can lead to increased depression, isolation and loss of independence for the care recipient (Brodaty et al., 2003). However, enabling and encouraging caregivers, therefore decreasing stress levels, had the opposite effect, with caregivers feeling more competent to continue caring long-term (Spijker et al., 2008; Droes, Breebaart, Meiland, Van Tilburg, & Mellenbergh, 2004). The World Health Organisation (2012) supported this notion by discussing the importance of providing caregivers with intensive and structured supports from numerous services early in the dementia journey, thereby delaying admissions by up to 40%.

Recent literature discusses how comprehensive family programmes, such as described by Wai Tong and Lee (2011), incorporate education, support and a team-based approach to care. Caregivers reported an increase in their overall quality of life, which coincided with a decrease in residential care admissions (Wai Tong, & Lee, 2011). This is supported by a study by Mittelman, Haley, Clay and Roth (2006), where caregivers received six counselling sessions, were involved in support group discussions and had access to continuous professional telephone counselling. The results showed a decrease of 28.3% in the number of residential care placements (Gallagher-Thompson et al., 2012; Mittelman et al., 2006). Additionally, caregiver satisfaction increased, with coping strategies resulting in decreased prevalence of depression and marked improvements in quality of life (Mittelman et al., 2006).

Gallagher-Thompson et al., (2012) determined that lack of knowledge and education given to caregivers by health professionals was a limiting factor in remaining at home. As seen in the 'REACH2' (Resources for Enhancing Alzheimer's Caregiver's Health) programme, resources and support services need to be accessible in multiple areas and cover a variety of ethnic and cultural backgrounds if they are to succeed (Belle et al., 2006; Brodaty et al., 2003). A variety of services need to work in unison to implement professional counselling sessions, supportive teleconferencing facilities and stress action plans, to delay admission into residential care and improve caregiver wellbeing (Belle et al., 2006). This multidisciplinary approach was also shown as a key success in the 'Savvy Caregiver' training program (Hepburn, Lewis, Tornatore, Sherman, & Bremer, 2007). This portable service enabled health consumers to access six professionally led sessions addressing a variety of challenges faced by caregivers. By targeting barriers identified by caregivers in providing adequate care Hepburn et al., (2007) reported an overall decrease in projected residential admissions. Concerns identified included mobility, access to necessary equipment, environment safety, caregiver motivation, and finally, integrating a whole team approach.

Jorgensen et al., (2009) further established and discussed how financial burden and stress heightens caregiver anxiety leading to increased rates of clinical depression. This is compacted by any paid support workers, coming into the home on a respite basis, being unavailable on holidays and weekends, creating complications in opportunities for part-time or long-term employment (Carers New Zealand, 2015; MSD, 2014). Government services such as Needs Assessment and Co-ordination Services (NASC) provide ongoing assessments to support caregivers after referral from their General Practitioner (GP) to mediate these respite services (ANZ, 2016d; Kim et al., 2012). Ongoing assessments provide nurses with the opportunity to discuss other resources which may help financially such as carer support benefits or respite (Aggar, 2016; ANZ, 2015b).

Nurses, therefore, have been identified as playing a key role in providing caregivers with resources, support and information throughout the progression of dementia (Chiao et al., 2015; Garity, 2006). Gillespie et al., (2014) noted that nurses remain a distinct point of contact for caregivers in multiple settings, giving them unprecedented opportunities to inform, train and support right from the onset of diagnosis. Recent literature has shown a noticeable theme regarding the role of nurses in facilitating coping and dealing with grief in caregivers, resulting in diminished rates of depression, anxiety and stress (Clarkson et al., 2016; Spijker et al., 2008). The grief process experienced by families affected by dementia, where anticipatory grief can exceed the perceived benefits to remain caring for their loved one, is often prolonged and complex (Garity, 2006). Nurses must therefore provide problem solving and coping techniques that empower the caregiver in feeling competent and worthwhile in their role (Brodaty et al., 2003; Droes et al., 2004; Spijker et al., 2008). In doing this effectively, the quality of life for the caregiver is improved and the focus is on developing their own personal strengths (Angelo, & Egan, 2015; Victoria House, 2014).

The New Zealand Carers' Strategy Action Plan (2014), provides an outline of how caregivers will be supported, acknowledged and resourced from 2014-2018 in New Zealand. The guiding principles validate the immense importance the caregiving role will have in future years and how best to enable and include care in strategic health planning (MSD, 2014). Government agencies such as Ministry of Health and the Ministry of Social Development have worked together in formulating provisional action plans alongside resources for consumers for those affected by dementia (MOH, 2016) These guidelines make information about services more accessible for caregivers, aim to raise awareness and decrease stigma associated with caregiving and co-ordinate services to meet the high level of support needed to remain in home. Additionally, support is provided by the Alzheimer's Society of New Zealand to caregivers, providing fact sheets and links to other service providers (ANZ 2016a; ANZ, 2016b). This includes up to date research undertaken by LiLACS NZ (Kerse et al., 2016), community services such as Presbyterian Support and training programmes for paid caregivers (Dorsey, 2014).

Recommendations

Research therefore suggests, that participation in support groups and programmes, specifically targeting dementia education, can help prepare caregivers for the journey ahead (Angelo, & Egan, 2015; DiZazzo-Miller et al., 2014). Furthermore, identifying gaps within caregiver knowledge and practical training can assist with building beneficial coping mechanisms as more challenges arise (Kim, H., Chang, Rose, & Kim, S., 2012). The predicament when viewed from a New Zealand context, is the current lack of these fully integrated services and up-to-date research on possible benefits or outcomes (Jorgensen et al., 2010).

If caregivers are to acquire the full benefits of support services, a multi-disciplinary approach needs to be executed (Schulz, & Martire, 2004; WHO, 2012). These supports can cover a broad range of caregiving needs such as psychosocial, emotional, financial, and holistic (Clarkson, Giebel, Larbey, & Roe, 2016; Angelo, & Egan, 2015; Chung, 2013). Research has identified gaps as to how caregivers gain access to appropriate equipment such as bath hoists, grab rails and ramps (ANZ, 2016b; MOH, 2015). Furthermore, appropriate use of these devices is often done on a trial-and-error basis by caregivers, resulting in potential injury to them and the care recipient (DiZazzo-Miller et al., 2014). Opportunities exist for provision of equipment by health professionals, such as occupational therapists and other District Health Board (DHB) services, whilst also providing practical education on use to carer’s (WHO, 2006).

Medication has also been highlighted as a barrier to keeping a person with dementia in their own home, where caregivers encounter lack of relevant information regarding administration and management of multiple medications (Angelo, & Egan, 2015; Laing, & Sprung, 2014; Angelo et al., 2013). Services such as GP clinics and District Nursing may offer strategies for maintaining medication compliance with datasheets readily available from Medsafe (Chiao et al., 2015). Pharmacists can contribute to the multidisciplinary approach by being readily assessable to caregivers by providing relevant health advice regarding use of medications (Garity, 2006). Supporting a caregiver has been shown to need a whole team approach where all healthcare professionals work alongside government agencies and voluntary services to address psychosocial, behavioural, mobility and emotional quandaries.

However, based on the outcomes from overseas studies, there is clearly recommendations to be made in New Zealand moving forward. These include:

• Advocating for evidence-based policies that would allow an expansion on the existing services by upskilling caregivers and reducing barriers to health service delivery (Gallagher-Thompson et al., 2012; Jorgensen et al., 2010; Brodaty et al., 2003).
• Implementing individualised and structured programmes targeted at caregivers that assist in managing dementia behaviours, including strategies to assist with management of incontinence and palliative care.
• Training caregivers in adequate manual handling skills, developing coping strategies and improving caregiver psychosocial wellbeing. This can be achieved by developing structured, yet individualized, programmes that address barriers identified by carer’s (Gallagher-Thompson et al., 2012).
• Improving health provider’s literacy regarding dementia and the caregiving role by placing value on the care provided by caregivers and identifying associated challenges (WHO, 2012; Brodaty et al., 2003; Schulz, & Martire, 2004) In doing so, the stigmitisation and lack of understanding associated with caregiving would be targeted, fundamentally by giving care givers a voice and personalizing each journey.

Conclusion

In conclusion, the role of caregiver for a person with dementia can be a challenging yet rewarding experience. By identifying dementia as a health priority worldwide, the WHO has brought it to the forefront of public health agendas. This is particularly relevant in New Zealand which has an aging population and will be notably reliant on increasing caregiver numbers in future years. Recommendations include reducing stigma and targeting the lack of awareness surrounding the valuable role of caregivers. To achieve this, caregivers need to have access to all the necessary tools such as correct manual handling techniques, information on medication and strategies to reduce stress. It is vital that the New Zealand healthcare system and government agencies work together in providing support services and ample resources for caregivers, from the moment of diagnosis throughout the progression to palliative care.

A multidisciplinary approach supporting caregivers has been shown to achieve high levels of delayed admission into institutionalized care for care recipients. The focus of integrated programmes is on helping the caregiver gain competence in providing adequate and safe care for themselves and their loved one. Greatest success has been shown when caregivers have access to a variety of resource mediums: mobile counselling services, online support groups and targeted education sessions with qualified professionals.

The role of nurses is highly influential in achieving positive outcomes for caregivers and care recipients who wish to remain at home. Nurses can further their own professional development by gaining better understanding around the prolonged grief process of caregivers and initiating further research into programmes and action strategies that will provide both short and long term benefits. Currently, the Ministry of Health is working alongside other agencies to implement changes to support caregivers and elderly in the community. For these changes to positively influence a caregivers’ decision regarding at home versus residential care, the education, training and resources must move from paper format into actionable programmes involving multiple community and professional inputs. 

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