Impact of Dementia on Carers and Person-Centred Care

Review narrative

The aim of this chapter is to collate and present the extracted data from the primary studies so that the characteristics and results of the study are summarised in a meaningful way.Hart (1998, p. 110 cited in Jesson et al.,2011, p. 123) defined synthesis as the act of making connections between the parts. The narrative synthesis is a textual approach to assess the robustness of evidence which may include exploring relationships within and between studies. Each article was read several times to allow for better understanding and familiarisation of the content. Bernard (2000) described such a method as ‘eyeballing’.

The review examines 10 studies and a summary of these studies can be found in the matrix of evidence tables above. Out of the ten peer reviewed articles included in the present review, one used a systematic review (Quinn, Clare, and Woods, 2009) analysing their data using thematic analysis, three used a quantitative methodology comprising one comparative (Ask et al., 2014) and two cross-sectional approaches (Papastavrou et al., 2007; Andren, and Elmstahl, 2008). Whereas six of the articles used a qualitative methodology made up two grounded theory approaches (Lin, Macmillan, and Brown, 2011; Botsford, Clarke and Gibb, 2012), two exploratory (Shanley et al., 2011; Landmark, Aasgaard and Fagerstrom, 2013) and two phenomenological designs (Vellone et al., 2008; Meyer, McCullough, and Berggren, 2016). One systematic review exploring the impact of relationship quality on the experiences and wellbeing of caregivers of people with dementia was found (Quinn, Clare, and Woods, 2009). Three of the studies used questionnaires (Papastavrou et al., 2007; Andren, and Elmstahl, 2008; Ask et al., 2014) to guide data collection, one used online databases (Quinn, Clare, and Woods, 2009), another one used focus group discussion (Landmark, Aasgaard and Fagerstrom, 2013) and the rest (five studies) used semi-structured interviews (Vellone et al., 2008; Lin, Macmillan, and Brown, 2011; Shanley et al., 2011; Botsford, Clarke and Gibb, 2012; Meyer, McCullough, and Berggren, 2016) to guide data collection. Of the 10 studies, one study was conducted in Australia (Shanley et al., 2011) almost a third (n=3) in the United Kingdom (UK) (Quinn, Clare, and Woods, 2009; Lin, Macmillan, and Brown, 2011; Botsford, Clarke and Gibb, 2012) and the remaining (n=6) were carried out in European countries excluding UK (Papastavrou et al., 2007; Andren, and Elmstahl, 2008; Vellone et al., 2008; Aasgaard and Fagerstrom, 2013; Ask et al., 2014; Meyer, McCullough, and Berggren, 2016). With exception of 2010, between one and two studies were published each year between 2007 and 2011. In the included papers, a study each was conducted in 2012 (Botsford, Clarke and Gibb, 2012), 2013 (Landmark, Aasgaard and Fagerstrom, 2013), 2014 (Ask et al., 2014) and 2016 (Meyer, McCullough, and Berggren, 2016). Though not all articles reported the characteristics of caregivers, the age range of carers included in the present review ranged between 27 (Andren, and Elmstahl, 2008) and 92 years (Ask et al., 2014; Meyer, McCullough, and Berggren, 2016). Sample size varies and ranged from six participants (Lin, Macmillan, and Brown, 2011) to 172 carers (Papastavrou et al., 2007). Pooling sample sizes together across the ten studies (Papastavrou et al., 2007; Andren, and Elmstahl, 2008; Vellone et al., 2008; Quinn, Clare, and Woods, 2009; Lin, Macmillan, and Brown, 2011; Shanley et al., 2011; Botsford, Clarke and Gibb, 2012; Landmark, Aasgaard and Fagerstrom, 2013; Ask et al., 2014; Meyer, McCullough, and Berggren, 2016), females were more likely to be carers than men and made up of more than two-thirds (69%) of the participants. Analysis from the data gathered from all the ten papers revealed that most carers were spouses (73.8%), followed by children (22.3%) and then other relatives (in-laws, siblings, friends) (3.9%) in that order. Botsford, Clarke and Gibb (2012) focused their study on the minority ethnic community. From the analysis of the review, patterns, commonalities, regularities and themes were discovered in the literature (Polit and Beck, 2009; Gerrish and Lacey, 2010). However, in identifying three emerging themes from the data, the writer adopted an approach suggested by Thorne et al. (2004) which allows for an immediate interpretation of relevance and implication to nursing practice with a more specific focus on lived experiences of carers. The themes: impact of caring on health and wellbeing of carers and their families, quality of relationship and support from mental health and social services will be critically discussed in detail.

Theme One: Impact of caring on the health and wellbeing of carers and their families  [2120]

Of the ten papers critiqued, eight of the articles (Papastavrou et al., 2007; Andren and Elmstahl, 2008; Quinn, Clare and Woods, 2009; Ask et al., 2014; Landmark et al., 2013; Lin, Macmillan and Brown, 2011; Meyer, McCullogh and Berggren, 2016, Shanley et al., 2011) explored the impact of caring on the health and wellbeing of carers and their families. Across the three quantitative studies, (Papastavrou et al., 2007; Andren and Elmstahl, 2008; Ask et al., 2014) data were collected using ten instruments, which were completed by the researchers and the participants during an interview. The instruments measured the level of burden of the caregiver, the subjective experience of health of the carer, presence of depressive and anxiety symptoms, cognitive and behavioural status of the patient, the patient’s severity of dementia, as measured by their social dependency, and strategies used by caregivers to cope with the stressors of care.

Researchers Papastavrou et al. (2007) and Andren and Elmstahl (2008) used the 22-item caregiver Burden Interview scale (BI) an instrument developed in Sweden (Elmstahl et al., 1996) to assess the carer’s health and feeling of psychological wellbeing. The internal consistency and validity of BI showed a Cronbach alpha values of 0.70-0.87. A reliability coefficient or Cronbach alpha values of 0.70 or higher is considered “acceptable” in most social science research situations (Kinnear and Gray, 2010). The second instrument, the Nottingham health profile (NHP) scale was used to measure the subjective experience of health using 38 statements (yes/no). The scale was developed in the UK and was tested for reliability and validity (Hunt and McEven 1980). A third instrument, the Euroqol (EuroQol, EQ-5D) is a standardised general system for describing and valuing health-related quality. The respondents describe their current health by choosing one of the three levels (no problems, some/moderate problems and extreme problems/unable to) in each of the five domains: mobility, self-care, usual activities, pain/discomfort and anxiety/depression (Busschbach et al., 1999). The EQ-5D has been psychometrically validated (Taylor et al., 2001). The fourth tool is the Hospital Anxiety and Depression Scale (HADS) (Zigmond and Snaith, 1983), an established, validated instrument consisting of 14 four-point Likert-scaled items is used to assess symptoms of anxiety and depression (Snaith, 1986). The fifth tool, the seven-item CONOR Mental Distress Index (CMD) assesses anxiety and depression (Søgaard et al., 2003). The sixth measure, the Center for Epidemiological Studies – Depression Scale (CES-D) is a 20-item scale used to assess the overall level of depression experienced in the past week (Raddloff 1977). Psychometric properties of CES-D have been shown to be strong in many studies (Madianos et al., 1992). Another instrument, the Memory and Behaviour Problem Checklist 1990 R (MBPC) (Zarit, 1990) assesses the behavioural status and cognition of the patient. Reliability was measured using Cronbach’s alpha and was found to be high, a = 0.85. The Berger scale is the eighth instrument which measures six levels of progressive deterioration and severity of patient’s dementia (Berger, 1980). From Level I (the patient is independent and can function in any surrounding, although forgetfulness is often disruptive of daily activities) to Level VI (the patient’s motor functions are severely affected, and the patient is confined to a chair or bedridden). The ninth measure, the Ways of Coping Questionnaire (WCQ) contains a wide range of questions on how people deal with the internal and/or external demands of specific stressful encounters (Folkman and Lazarus, 1998). Lastly, the 29 items sense of coherence scale (Antonovsky, 1987) measures the concept of the Sense of Coherence (SOC). Antonovsky (1993) has reported high validity and reliability with alpha values on the SOC scale of 0.82–0.95 in various studies.

Papapstavrou et al.(2007) assert that spouses, children, relatives and friends who take care of patients experience emotional, physical and financial stress. There is also evidence of the correlation between chronic stress exposure in carers of patients with dementia and physical health decline, reduced quality of life and psychiatric morbidity (Papastavrou et al., 2007; Andren and Elmstahl, 2008; Ask et al., 2014). Experiencing chronic stress may result in reduced standards of care, neglect or even abuse of the patient, and indicate the need for a care home or residential placement.  The result from Burden Interview shows that 57% to 68% of carers were highly burdened (Papastavrou et al., 2007; Andren and Elmstahl, 2008; Ask et al., 2014). Regarding relationship between carer and care-recipient, a chi-square test showed an association between close relative carers and high burden with spouses having the greatest burden with a mean 2.48 (SD 0.56); followed by children, 2.09 (0.47) and other carers, 1.77 (0.66). The finding of this study was in agreement with other reports that caring for a relative with dementia is stressful and burdensome (Annestedt et al., 2000; Tornatore and Grant 2002).

A consistent finding suggests 65% of carers exhibiting depressive symptoms is a major consequence of care (Papastavrou et al., 2007; Andren and Elmstahl, 2008; Quinn, Clare and Woods, 2009; Ask et al., 2014; Landmark et al., 2013). Papastavrou et al (2007) further indicate that approximately one-half of carers (49.41%) scored above the risk level for the development of clinical depression (Yee and Schultz 2000). The authors (Ask et al., 2014) indicated that more than two-thirds of spouses (69%) and nearly a quarter of children (23%) reported experiencing the symptoms of anxiety/depression. Papastavrou et al. (2007) found that depression in carers was highly associated with problematic behaviour (r = 0.35) leading to the conclusion that the patient’s behaviour was predictive of caregiver depression as well as the burden. The behaviour most strongly associated with burden was aggression (r = 0.44), which contains items such: the patient is suspicious, makes accusations and becomes angry, talks aggressively or threateningly. This finding can be explained by the long duration of caregiving careers, which range from 1 to 13 years (Papastavrous et al., 2007), and the tensions involved in this role. Anger, apathy, verbal aggressiveness and similar behaviours have also been mentioned in other reports (Annestedt et al., 2000; Robinson et al., 2001; Mourik, 2004). In another study, Croog et al. (2006) noted that emotional instability and destructive behaviour were correlated with low levels of caregiver wellbeing, stress and depression. This is in agreement with previous reports (Mittleman et al., 2004) that burden and depression are at the heart of dementia caregiving stress.

Following is a discussion on some of the drawbacks and limitations in the data collection tools and the quantitative studies. The Burden Interview (BI) scale was designed to assess carers to relatives with common geriatric diseases but the researchers used it to collect data from the participants caring for relatives with dementia (Papastavrou et al, 2007; Andren, and Elmstahl, 2008). Since BI was not specifically designed to collect data for dementia disorders, it calls into question its applicability to carers of patients with dementia. Despite this weakness, the identification of factors contributing to burden could provide the framework to develop programmes designed to relieve carers stress and to alleviate effects of caring. The cross-sectional research design (Papstavrou et al., 2007; Andren and Elmstahl, 2008) bases its finding on the evidence of experiences measured at a single point in time (Strydom, Livingston, King and Hassiotis, 2007). Thus, it cannot support any assumptions on cause or effect – a methodological factor that ignores the dynamic nature of caregiving. Moreover, the noted association between impaired health and burden could be as the result of the caregiving situation as well as an independent modifying effect of the health condition of the carer. The generalisability of this study is limited because of possible self-selection bias inherent in any study that uses volunteers (Webb and Roe, 2007, p. 142, Gerrish and Lathlean, 2015, p. 242) Cares who volunteered to participate in the study may have been more aware of the possible impact of problem behaviours on carers well-being than the average caregiver. Another limitation is that patients were studied at different stages of their disease and selection was based on diagnoses and not a clinical examination. A third weakness might be a possible ‘response bias’ (Robinson et al., 2001; Polit and Beck, 2010, p.349) because the instruments use self-reports and the subjective answers provided could not be verified objectively. The use of structured instruments also did not allow the free expression of the caregivers’ views, and a wealth of information is lost when using such methods.

Silverman (2010), recognised the limitations with cross-sectional design and criticised quantitative approaches as being restricted to their understanding of carer experience, particularly about the emotions and perceptions of carers. Qualitative studies can contribute to a fuller understanding of how the caregiver perceives the relationship with the care-recipient. These studies can also permit a more in-depth examination of the complexity of relationship changes. Besides, some of these studies have also explored longitudinal relationship changes, an area that quantitative research has tended to neglect. Landmark et al. (2013) using focus group interview stress on the relatives’ health and wellbeing being an important condition for persons with dementia being able to remain at home. Lin et al. (2011) conducted a grounded theory longitudinal study of carers’ experiences of caring for people with dementia living in their own homes. Grounded theory was chosen for its suitability in generating new perspectives from familiar phenomena (Silverman, 2010). A longitudinal design was applied to investigate the nature and degree of changes over time (LoBiondo-Wood and Haber, 2014).  Meyer et al. (2016) selected a descriptive phenomenological method, as the intention was to describe the experience of living with a person affected with dementia. This method was chosen to capture the participants’ experiences, thereby generating new knowledge and reflections that may be useful to health professionals. Phenomenology was deemed the most appropriate as it relates to a description of the life-world and allows insight into ethical and moral aspects, as well as the problems encountered by the participants in their everyday lives (Galvin and Todres, 2012).

In the Landmark et al. (2013) study several participants reported feeling distressed over the individual with dementia helplessness regarding their basic needs, everyday problems, and actual problems. Some participants experience insecurity and powerlessness about the prevention of dangerous incidents as the relative is exposed to danger. A carer reported of how the mother started a fire with wood, lit the stove with paper, left a bag of ashes on the porch to burn and called the fire department that there was the fire in the house. Some of the participants reported of not sleeping better at night (Landmark et al., 2013; Meyer et al., 2016). The nights were most distressing as their desperately needed sleep was disturbed, which reduced their strength to continue caring for their partner. A husband reported that the situation sometimes became so bad that he was prevented from sleeping for more than three hours per night. The following statement indicates that caring for beloved parents who are suffering from dementia and living at home is similar to keeping a 24-hour guard: “We don’t sleep better at night because of it, you lie there at night on pins and needles and wait for the phone to ring and he’s afraid, there are people in the house and someone else will go out and check what’s happening”. Other participants reported that their spouses continually call the police dialing ‘999’ to report there was an intruder in the house and their lives were in danger. Several spouses stated that their partners began to have irregular sleeping habits, which together with suspiciousness and hallucinations resulted in them going out at night and even getting lost. All these changes were explained not only by the affected person but also by the healthy spouse. Seeing one’s partner change and exhibit forgetfulness, hallucinations, and suspiciousness was difficult and frustrating and led to feelings of irritability, confusion, and sorrow. Many carers were keenly aware of the constraints they faced in the present and expressed anxiety about their ability to manage the burden of care as time went on. Participants expressed that they experience despair over their loved one’s loss of identity and that it is painful and humiliating to witness their loved family member decline.

There are both strengths and weaknesses in the qualitative studies. A limitation is the small sample sizes and the inability to generalise findings. The qualitative studies did not aim to produce statistically significant results rather the studies sought to understand the experiences of family carers as expressed by their own stories.  Despite the relatively low number of participants, the results deepen health professionals’ understanding of spouses’ life-world and can thus be transferred and applied (Dahlberg et al., 2008) to other health-care contexts.

Theme 2: Quality of Life [1048]

A further synthesised theme is the of quality of life as experienced by the carer. There is no definitive definition for quality of life (QOL). However, in exploring the meaning, several aspects of quality of life are common throughout the literature. Several studies (Bowling et al., 2003; Suchorzepka and Nasilowska-Barud, 2004; White et al., 2004; Kitrungrote and Cohen 2006) conducted take into account socioeconomic status, income, physical functionality, social support network, life satisfaction, ability to work, happiness, meaning of life, adjustment, attitudes, mood disturbance, burden, self-esteem, housing, value of life and culture as factors contributing to quality of life. In a study, Argimon et al. (2005) demonstrated that low QOL in carers of relatives with dementia is a contributor of nursing home placement for the service users.

In the review, three of the studies (Vellone et al., 2007; Andren and Elmstahl, 2008; Ask et al., 2014) examined the meaning of quality of life for the carers and identified factors that affect their quality of life. Two of studies adopted the quantitative methodology (Andren and Elmstahl, 2008; Ask et al., 2014), while one opted for the qualitative approach (Vellone et al., 2007). In a hermeneutic phenomenological study design with a consecutive sample of 32 carers, Vellone et al. (2007) reported that most of the participants explained QOL to mean tranquility, serenity, freedom, good health, financial status, general wellbeing and psychological wellbeing. Some of the carers expressed their QOL before taking on the role of caring and changes thereafter in their lives. A participant stated: “before my mother had Alzheimer’s we had a good relationship and our lives were serene, but now we both are not”.  Further to exploring the meaning of QOL, the participants in Vellone et al. (2007) study mentioned service user’s good health, independence from the patient and support as factors associated with improved quality of life. The participants identified worries about the future, stress and disease progression of the service user’s as factors that worsened their QOL. Though Vellone et al. (2007) used a large sample size for the study, there was an inherent selection bias as the participants were self-selected volunteers which may affect the final results. They stated the inability to generalise the findings due to cultural differences and lack of homogeneity of the participants.

Andren and Elmstahl (2008) conducted a quantitative study using the cross-sectional approach. Their findings were based on 130 family carers to 130 relatives with dementia living at home in two districts of a municipality in Sweden. A limitation of the cross-sectional study is it cannot support any assumptions. Gerrish and Lathlean (2015, p. 263) argue interpreting the associations in the findings with caution as biases may arise because of selection into or out of the population. Children and spouses formed 86.9% of the study population (Andren and Elmstahl, 2008, p. 792) so the small number other relatives like friends, further distant relatives and grandchildren limits any generalisation to spouses and children. A limitation which borders on ethical consideration is the use of oral information, phone call and home visit to inform participants about the aim of the study.  The Declaration of Helsinki (World Medical Association, 2017) guideline requires researchers to seek participants informed consent preferably in writing and to give written information of the aims of a study.  The authors used five different tools (caregiver burden scale (BI), sense of coherence scale (SOC), Nottingham health profile (NHP), Euroqol instrument (EuroQol, EQ-5D) and Berger scale) to collect data on numerous variables. The SOC scale was utilised to predict the quality of life of the participants. Antonovsky (1993) has reported high validity and reliability on the SOC  in various studies. The scale has also proven to reliable when tested on Swedish men and women (Langius, Bjorvell and Antonovsky, 1992). From the study (Andren and Elmstahl, 2008) carers with the lowest SOC were noted to have the highest mean scores of burden, general strain, isolation, disappointment, emotional involvement and environment. Carers with low SOC are reported to find the caring situation less comprehensible, more challenging to manage and less meaningful and do have worse health, worse quality of life and a smaller social network. Kristensson (2004) identifies the SOC as a viable and potentially powerful concept in helping to understand some of the negative and positive consequences of caring for an older family member. Participants with high SOC have a greater coping capacity, better successful coping strategies and good quality of life.

Ask et al. (2014) used a large population-based sample of spouses to conduct a cross-sectional quantitative study investigating the extent to which variables such life satisfaction, depressive symptoms and anxiety symptoms have on the quality of life of the carer (Shah, Wadoo and Latoo, 2010). As specified earlier on, life satisfaction and mood are factors contributing to QOL. The combined Hospital Anxiety and Depression Scale (HADS) and CONOR Mental Distress Index into a single instrument was used to assess depressive and anxiety symptoms. Findings indicate that spouses caring for a partner with dementia experienced moderately low levels of life satisfaction (0.35 standard deviation [SD]), more symptoms of depression (0.38 SD) and anxiety (0.23 SD) than did non-caregiving spouses. The results further showed that having a partner with dementia that resides at home is associated with high level of life satisfaction than having a partner living in a nursing home. The distress associated with having a partner with dementia in a nursing home compared to having a partner living at home may indicate that interventions aimed at delaying home placement may be important. The CMD and HADS have been tested for reliability and validity with Cronbach’s alphas 0.85 and 0.80 for the anxiety and depression scales respectively. An advantage of the study is that initially there was no selection bias in choosing participants from the population living in Nord Trondelag. However, the selection process in the HUNT study was not verifiable. There are few limitations of the study. First, there is lack of statistical power to estimate the sample size (Polit and Beck, 2014, p.181). The second limitation is that the authors defined carers to be only spouses; therefore, the results cannot be generalised to other relatives such as children and friends. Thirdly, using a cross-sectional data design does not permit causal conclusions (Aveyard, 2010).

Theme 3: Support 1121

The third theme Support is common in six of the selected papers (Andren and Elmstahl, 2008; Vellone et al., 2008; Lin et al., 2011; Shanley et al., 2011; Botsford et al., 2012; Landmark et al., 2013). The participants chose the term support to refer the types and functions of help and assistance received from the family, health and social services, and the community.

Botsford, Clarke and Gibb (2012) used a constructivist grounded theory approach to explore the experiences of Greek Cypriot and African Caribbean partners of people with dementia to inform policy and practice. The study consisted of a series of in-depth interviews with a sample size of 13 participants recruited through convenience sampling. One of the limitations is the small number of participants who were already in touch with mental health services. The method of sampling used is prone to volunteer bias. Thus, the sample results cannot be extrapolated to give population results (LoBiondo-Wood and Haber, 2014). The Greek Cypriot participants had the choice of being interviewed through an independent Greek interpreter of which three of the participants took up the option. There is evidence to suggest that using professional interpreters can: enhance participants knowledge and understanding, and lead to fewer communication errors (Karliner et al., 2007). However, working with interpreter can complicate the relationship between interviewer and interviewee and rapport can be affected (Farooq and Fear, 2003) with the participant being talked about in the third person and excluded from the interview (Tribe and Morrissey, 2004). From the results, the African Caribbean participants tended to be couple or individual-orientated and preferred managing independently or by using formal services. In contrast, the Cypriots participants were family centred and tended to seek help from friends with assistance from services only being appropriate where needed to supplement this and enable the person stay at home. Ethnic background is vital in relation to whether family or formal care is preferred by partners of people with dementia. The study was limited to ethnic groups, and the findings cannot be generalised across other ethnic groups.

Andren and Elmstahl (2008) reported on the association between dissatisfaction with help from the health and social services, and distress in the caregivers. Similarly, Vellone et al. (2008) noted participants complaints of not receiving much support from the National Health Service and Social Services as well as the obstacles encountered for relatives in obtaining information due to professional secrecy. Many participants found mental health nurses visits to be of short duration with a significant portion of the care provided relating to the management of medication. Shanley et at. (2011) corroborated that many carers bemoaned the lack of coordinated help in identifying and accessing available resources over the course of their relative’s illness. Moreover, participants expressed their frustration with the non-existence of connection between the social worker, the CMHT, the doctor, and other professionals as they did not observe or feel the presence of teamwork. Landmark et al. (2013) on the other hand highlighted how some participants felt the person with dementia was being tossed around the system and having been let down by the CMHT nurses for not taking responsibility for the situation.  A participant expressed his frustration stating: “Who knows what, who will take care of this? It doesn’t belong to us; we haven’t received any paperwork, so we feel like a ball then. Then I call the day nurse on that ward, I’ve done that several times to begin with . . . Then they wanted me to do it; I feel they should, that I should call the GP responsible and discontinue the medication and remove the patch, I feel this was the Community Mental Health Team’s task”. Conversely, Lin et al. (2011) describe the satisfaction expressed by participants on receiving support from social services. An excerpt from the interviews illustrates the assistance received from occupational therapists who provided equipment such as wheelchairs, commodes and hoists. “That’s from the social services yes. And then they had, eh . . . We also had a new . . . That’s a different wheelchair, and we also have a different commode now, and again with the support” (Participant A). The Scottish Executive (2001) relates to updating service user’s equipment to accommodate the progression of dementia which indicates the importance of ongoing assessment of carer need.

Landmark et al. (2013) reported of participants preference of material help to psychosocial support. To buttress the point, one of the carers stated ‘‘I need not psychological support or help or words to encourage me but ‘material’ help, someone who can help me physically in caring for my father’’. Respite or ‘time out’ from caregiving responsibilities was by far the most frequently mentioned form of instrumental support that carers valued while their relative continued to live at home. In some cases, it was provided by a family member or friend and in others by formal respite services. In contrast, Shanley et al. (2011) identified that some of the participants valued psychosocial support in the form of acknowledgement of their role, help with difficult decisions, or just having an empathetic person to talk to than practical assistance.

Some of the participants in the review received a great deal of assistance from a well- facilitated support group and felt it was one of the essential ways their needs were met.  Lin et al. (2011) recognised the role of voluntary organisations and observed that a number of the participants contacted such agencies to receive information, advice and practical support. A significant source of support for many was a carers’ support group where carers acquire relevant information packs designed to enhance understanding of the particular condition, symptoms and needs of their partners, and advising on the management of care demands. However, Shanley et al. (2011) believe the range of information received, and support from the voluntary organisations may not be comprehensive.

Lin et al. (2011) acknowledge family support as being the significant help received by most carers.  The carers have the opportunity to release their feelings, to express and share emotions with other family members, as well as providing a break from the demands of care, and help with carrying out some of the tasks involved in caring. In a quantitative study Scott, Roberto, and Hutton (1986) confirmed that such support is a practical resource, positively associated with the carer’s ability to deal better with the demands of caring. Input from friends is one of the most critical sources of informal support for participants. Carers reported receiving varying degrees of emotional help from their friends, providing opportunities to talk, either on the phone or by meeting together. All carers who received this type of support described the sympathetic company of friends as a source of strength and reassurance.

Conclusion, Implication to practice and recommendations

Matt’s Wed 18102017 The objectives of this dissertation have been to access the available evidence of the impact of dementia on carers and to make recommendations from the review regarding the promotion of person-centred care and delivery of high quality standard of care (NMC, 2015). Having explored the impact of caring for an individual with dementia, it is important to draw conclusions while assessing the implications for mental health practice. This systematic review has suggested the association or link between the experiences of carers of individuals with dementia and the development of psychological, physiological and emotional outcomes on caregivers’ wellbeing. This review has highlighted the profound effect that dementia has on the family

Qualitative studies featured dominantly in the review. The findings show that further research is needed to verify findings and address some the methodological limitations of these studies. For instance, quantitative studies utilisation of convenience sampling with its inherent self-selection bias and the use of small sample sizes implies the findings cannot be generalised. Though the number of participants in the qualitative studies was relatively low, the results deepen mental health nurses understanding of carers lived experience and can thus be applied and transferred (Dahlberg, Dahlberg and Nyström, 2008).  The review has yielded some interesting insights to the experiences and needs of carers that can be used by carers, family and friends of carers, and health professionals to improve the sensitivity and flexibility of care and support provided to people dementia and their carers. The majority of people living with dementia are being cared for by family member at home. As the life expectancy increases, the total of people with dementia worldwide is increasing and estimated to reach 65.7 million by 2030 and 115.4 by 2050 (Wimo and Prince, 2010). This will be increasingly important and will present a global challenge as the number of carers providing care for a relative with dementia is expected to rise (Ask et al., 2014)

Conclusion: The first theme dwelt on the impact of caring on the health and wellbeing of carers and patients. It was found that a relative’s dementia disease has a great impact on the family carer’s well-being in terms of burden, health and wellbeing.  Carer’s burden can be remedied through the assessment of status of family carers of a person with dementia living at home. Community mental health nurses are in the best position to assess, prevent or intervene in problems related by stressful care giving situations. The nurses in the community are in ideal positions to provide education about dementia and clarify the caregiver’s needs. In supporting the carer, community settings can provide necessary help at home, enabling carers to continue to live with and provide care for their respective relatives in the home for as long as possible. Organisational culture and leadership in the mental health services and at the local level must facilitate both person-centred care and family support.

The findings of this review have implications for healthcare professionals and practice because they shed light on the second emergent theme, Quality of Life (QOL). There are aspects of care that should be emphasised to improve the QOL of carers of patients with dementia. As demonstrated in other studies (Droes et al., 2004; Gitlin et al., 2005), the mental health nurse should provide support, advice and education for the carers to make them more serene and tranquil. The carers expressed worry about the progression of the service users’ disease and were stressed. The CMHT should help the relatives to understand the health condition of the dependent person by teaching, guiding, and supporting the family. Educational interventions about the course of the disease and its management could assist carers have better QOL. Interventions should also include other types of support that the caregivers noted, such as financial support and physical help. Carers education in how to care for patients at home can improve the QOL of both the carers and the recipients of their care, thereby allowing service users with AD to live at home longer and lowering public healthcare costs (Kalra et al. 2004).  The nurses in the community need to focus on the ethical dimension in caring of patients suffering from dementia and they need competence to support and guide the family in coping with ethical dilemmas. To search and increase the positive effects of family caregiving is a challenge to all healthcare professionals for optimum levels of quality of life. Nurses have to show sensitive to family members who wish to become involved in the care of their relatives and types of involvement in care. Some of the benefits for the carer might be more time for respite care and recreational activities and less physical strain. Valuable information about the caregiver’s situation can be captured by an such as the SOC. Kristensson Ekvall (2004) concludes that the SOC is a viable and potentially powerful concept in helping to understand some of the positive and negative consequences of caring for an older family member. To utilise the findings, the community mental health team can help carers to identify their negative experiences about caring and help them to reflect upon their coping strategies to find balance in their situation.  It will also assist the nurses to identify those at risk of negative effects of family caregiving, especially, possible risk groups with low perceived health and sense of coherence. In practice, professionals need to understand the whole context within which care is provided for an individual. Professionals should be aware of, and act sensitively towards, carers who might have difficulty in asking for help, have negative prior experiences, when they have been given negative feedback, and should offer anticipatory help for the future, based on a sensitive assessment of the individual’s needs. Such knowledge from identifying those at risk can help target specific interventions and support programs to those who need them the most, which will eventually benefit both individuals and society. For example, targeting subgroups of individuals that experience high distress symptoms might be a particularly effective strategy.

On the third theme, Support, most participants expressed their dissatisfaction with the level and type of help received from the health and social services. Others are of the opinion that the health and social services had been supportive and provided enough assistance to meet their individualised needs. A prominent complaint is the over concentration on medication management by the Community Mental Health Team as well as spending less than with carers and the service users. The uncoordinated approach of doing things by healthcare professionals was very frustrating for the carers. While some participants expressed the need for practical help, others preferred to be assisted psychologically. Interventions should also include other types of support that the caregivers noted, such as financial support and physical help. Interventions provided for the carers must be based on-going individual needs assessment. Botsford, Clarke and Gibb (2011) highlight the need for nurses to recognise the uniqueness of individuals to enable them address needs in ways which are appropriate and acceptable

The dissertation explored the experiences of being a relative of an individual suffering from dementia and its implication to mental health practice. Despite the methodological limitations of these studies the results and findings can be transferred and applied to other health-care contexts. Future studies on multi-professional research should be carried out to provide scientific knowledge to the groups of professionals who include the relatives of dementia-suffering persons in their work.

Plan for dissemination

The impact of research and evidence on policy and practice can result in positive outcomes.

(Ssengooba et al., 2011). Le May and Holmes (2012) emphasise the dissemination of finding as a significant activity to do to complete the researcher’s job. Gerrish and Lathlean (2015 p. 539) indicate that communicating findings is essential if the knowledge generated is going to be used by the nursing profession. Polit and Beck (2010) argue that a study cannot contribute evidence to nursing practice if the results are not communicated. Disseminating the research results does not only increase awareness, understanding, action, or support for involvement (WHO, 2014) but also dissemination gives the researchers an opportunity to learn from one another experiences and to engage in networking with others working in a similar field. The NMC (2010) requires that as change agents, nurses have to maintain leadership through quality improvement and service development to increase people’s well-being and experiences of health care. In doing so, the NMC (2015) recommends registrants to utilize latest knowledge and evidence to assess, plan, implement and evaluate care, communicate findings, influence change and promote health and best practice. Goode (2000) acknowledges the significance of disseminating results which includes the use of findings in practice to provide evidence-based health care to patients and replication of the study. According to the WHO (2014), active dissemination strategies feature two-way dialogues (not just from the stakeholders/ researchers to an audience, but also feedback and responses from the audience); precisely tailored and targeted messages suited to particular audiences. It is essential to understand how the audience absorbs research evidence, their timeliness and needs as this will significantly boost the likelihood that the dissemination approach will meet its objectives (Webb and Roe, 2007). There are different forms including journals, books, reports, fiction, poetry, dance, drama and visual art that may be used to disseminate findings (Annells, 2005). The choice of a form should be dependent on the intended audience (Noblit and Hare, 1988 cited in Webb and Roe, 2007). This systematic review finding will be disseminated through presentations, written reports and publications to audiences of fellow students, nurses, health care professionals, policymakers and health care consumers. The NMC (2014) encourages nurses to communicate effectively using a wide range of strategies and interventions including the efficient use of communication technologies. There are three key identified audiences for the dissemination of this research; these are peers; nurses and publication in a Trust newsletter and or Nursing Standard.

As part of the formative assessment and in fulfilment of academic requirement, a ten-minute seminar presentation as required by the university will be delivered to fellow students in the presence of lectures in February 2018.  The presentation would contain an overall summary of the process of the systematic review through the conclusions to its implication to nursing practice. An oral presentation with powerpoint will be the communication strategy to use. The NMC (2014) advises using the full range of communication methods, including written, verbal and non-verbal, to acquire, interpret and record their knowledge and understanding of people’s needs. The ability to give a presentation provides the opportunity to practice a useful transferable skill. Powerpoint slides present an excellent format for communicating findings; they include colour, easy reading fonts, creative background, and pictures or visuals to clarify points whereas verbal presentation is an opportunity to produce coherent, well-constructed presentation. In using power point slides, Gerrish and Lathlean (2015, pp. 528) advise preparing one slide per two min of presentation. The benefits to accrue from this successful presentation will lead to increase knowledge in professional and personal development, as well as psychological benefit (Burns and Groove, 2005). The feedback and responses from the audience will aid in revising and improving particular messages suited to the next targeted audience, nurses.

The next group to benefit from the dissemination of findings would be the practising nurses with the Community Mental Health Team for Older People (CMHTOP). This category of nurses is in daily contact with people diagnosed with dementia and their families in the community. There had been a previous discussion with the clinical team leader (CTL) who had agreed in principle that between 10 – 15-minute slot would be allocated during one of their reflection meeting days scheduled on Tuesday mornings for the presentation. Though there has not been a tentative date, a proposed date in the fourth week of February 2018 is being considered. Consideration for a tentative date is dependent on the discussion of ethical issues and gaining approval from the appropriate person or committee within the trust. The method of dissemination will be an oral presentation and a report. To prepare a manuscript for publication, Le May and Holmes (2012) highlight the soliciting and taking note of questions, comments, suggestions made by the audience during the presentation. From the meeting, an actionable messages and recommendations would be generated for broader dissemination.

Since carers are also part of the report, Carer Groups would be contacted to arrange and organise a face to face interaction to share the findings with people with dementia and their family carers. A maximum of four and a minimum of two of such meetings will be held at two or four different local locations between March and June 2018.

Finally, the last chosen dissemination channel would be writing for possible publication in a Trust newsletter and writing for a trade journal-such as the Nursing Standard. The rationale is to reach a wider audience including both the lay and professionals. Holland (2010) affirms that publication in written form, in academic and professional journals, remains the most widely accepted method of dissemination of research. Earliest possible time writing is by June 2018 latest by November 2018. In conclusion, the multi-faceted approaches to communicating the findings enable researchers and practitioners to discuss the results and provide some feedback about the usefulness of the study and possible avenues for further research.