"For better for worse is not easy’’, Challenges and Needs of Family Caregivers of Dementia Patients Seeking Care in Kumasi: A qualitative study

Background: The challenges and needs of family caregivers of dementia patients usually go unnoticed which could worsen the condition of both the caregivers and recipients in Ghana. The purpose of this qualitative study is to explore the challenges and needs of family caregivers of dementia patients who seek care at the Komfo Anokye Teaching Hospital in Kumasi Metropolis of Ghana. Methods: With no predetermined sample size, 18 participants took part in the study. The study employed a phenomenological and an in-depth interview guide. The data were analysed using interpretive phenomenological framework. Results: Three main challenges of family caregivers were identified: economic challenges ( inability to buy drugs, limited income, high healthcare use charges, inability to work and lack of financial support), social challenges (lack of social participation, mockery and societal victimisation), and psychological challenges (stress, emotional trauma and inability to sleep). Three main needs of family caregivers were reported: physical needs (personal assistance, transportation assistance, physical attachment from spouse and inability to eat), societal needs (social gathering involvement and societal concerns) and psychological needs (free time to relax and faith assurance). Conclusion: The authors argue that there should be a rethinking of how caregiving is constructed in Ghana. We further add that the health and well-being of caregivers should be a paramount aspect of patient well-being in Ghana in line with the Ghana Mental Health Act. It is therefore essential for clinician to institute caregivers needs in their medical plan for mental patient’s recovery process.


Introduction
Most recently, there has been a growing research interest in the rewards and satisfactions associated with family caregiving [1]; [2]. The "invisible second patients", often referred to as the family caregivers of people with dementia, play a critical role to the quality of life of care recipients [3]. Caregivers are the pivotal support system of care for individuals with dementia at home [4]. However, studies have reported adverse effects of caring for a relative especially dementia patients.
Family caregivers of dementia patients experience depression at least once in their life cycle and are reported to be diagnosed with either depression or anxiety disorder at a rate 2-3 times higher than the public [5]. Specifically, family caregivers of dementia patients who experience depression have high vulnerability to stress, experience decreased self-esteem and increased despair, and in severe cases, contemplate suicide [6]. Reportedly, taking care of elderly dementia patients decreased life satisfaction and increased depression, therefore reducing quality of life [7]. Caring for a dementia patient as compared to caring for other sickness can have huge higher levels of psychological distress and lower levels of confidence [8].
In Ghana, the 2010 Population and Housing Census revealed that ageing population has increased up to 87% from 1960 to 2010 [9]. This, therefore, indicates higher possibility of an increased in dementia in Ghana as the disease is strongly linked to ageing. For instance, two studies independently put the populations of dementia patients in Ghana around 39,916 and 45,302 in 2007 and 2010 respectively [10]; [11]. Meanwhile the cost of dementia treatment in Ghana is around $87.9 million [11].
However, as caregiving specifically caring for dementia patients appears to be an emerging scholarly field in Ghana, much is not known on experiences particularly challenges and needs of family caregivers in the country. Though, some empirical studies have been conducted in this research area, none focused specifically on family caregivers of dementia patients. For example, a study by [12] generally explored the role of women and challenges faced as caregivers in rural and urban settings in Ghana. Again, studies in Ghana [13]; [14]; [15]; [16] focused on dementia but little emphasis was on the caregiver's experiences. Thus, there is a gap in the literature concerning family caregivers of dementia patients' challenges and needs. This study attempts to fill this gap by exploring the experiences of family caregivers of dementia patients in terms of their challenges and needs in Ghana. A comprehensive understanding of these experiences would offer valuable information for policymaking and implementation concerning ongoing discussions and efforts toward integrating family caregiving into the formal care system in Ghana.

Study design and context
The study employed a phenomenological design because the authors aimed at gaining a deeper understanding of family caregiving and its associated challenges [17]. Phenomenological research is well suited in situations where the goal is to understand people's ''common or shared'' experiences [18]. Thus, by understanding family caregiver's experiences through phenomenological study, our appreciation of their experiences will be better valued. The study was conducted at the Komfo Anokye Teaching Hospital (KATH). KATH is the main referral point for all hospitals and clinics from the northern part of Ghana, that is about six (6) regions refer patients to the hospital. The hospital has 1200-bed capacity and roads linking to the hospital is accessible.

Participants and recruitment procedure
Participants of this study were carers of dementia patients who were with their respective care receivers at the Psychiatric Unit of the Komfo Anokye Teaching Hospital from the period between (November 2018 to January 2019). Purposive sampling procedure was used to recruit the participants, as the sample was chosen deliberately on the basis that those selected can provide the necessary data for the study [19]. The specific characteristics that warranted a purposive sampling are captured under the heading eligibility criteria. This technique allowed the researchers to pick a selected group of individuals most appropriate to answer the questions and select the specific information sources required to gain insight into the research study. A total of 18 participants were used for the study, that is, 13 females and 5 males.

Eligibility criteria
In selecting the participants for the study, the research set the following criteria for inclusion: 1.
The family caregiver should be able to express him or herself either in Twi (the local dialect of the area), English language or both.

2.
Family caregivers must have been involved in caregiving for at least a year to provide detailed responses for the research.

3.
Participants should be 18 years or over, to constitutionally be matured to answer question.

Data saturation
With no predetermined sample size, 18 participants took part in the study because this was the point when a saturation point was reached, and that new information were not coming from respondents but rather repetition of information . The general   principles and concepts of no new data, no new themes, no new coding, and ability to replicate the study were encountered [20]. At this point, the researchers valued variation over quantity [21] and were confident that the categories were saturated, with the descriptions of these categories being sufficiently rich to allow for analysis to be undertaken.

Data generation tool and procedure
Since the study employed a phenomenological approach in examining the were audio recorded and ensured that all discussions were devoid of third party interreferences.

Data analysis
The data were analysed by screening and reviewing all the interview for understanding and predominant themes were collated and then analysed using interpretive phenomenological analysis. Interpretative phenomenological analysis (IPA) recognizes that different people perceive the world in very different ways, dependent on their personalities, prior life experiences and motivations. It attempts to explore/understand/make sense of the subjective meanings of events/ experiences/states of the individual participants themselves [22]. The analysis constitutes transcribing, reading, reflective writing, and interpreting rigorously [23].
The transcription was done verbatim, that is they were no omission of any part of the original recording when transcribing. Each reading and listening helped to get a new insight into the data. The themes were derived directly from the experiences obtained from interacting with the respondents rather than the prior theoretical standpoint of the researchers. These themes were compared to the responses to identify common trends, similarities and differences. The interpretive phenomenological analysis provided the opportunity to identify, analyse and report patterns within the data and help to organize and describe the data in rich detail.
The study results were presented under several themes and key subjective views of the participants were discussed using quotations.

Credibility and trustworthiness of the data
A consolidated criterion for reporting qualitative research (COREQ): a 32-item checklist for interviews developed by Tong et al. [24] was adapted as a checklist to 9 underpin all interviews and the qualitative procedure. This checklist assesses the credibility and trustworthiness of the data and is a strong and scientific analysis of credibility and trustworthiness in data collection.

Ethics consideration
Ethical clearance for fieldwork was, therefore, obtained from the Committee on and risks of the study, was explained to the participants and they were well informed that they have the right not to join or to partake of the study. Again, respondents were assured of strict confidentiality of the data provided. Finally, participation in the study were declared as voluntary and as matter of fact, study participants were free to opt out of the survey anytime they deem fit [25].

Background of Participants
A total of eighteen (18) participants who were all family caregivers and play various roles as mothers, fathers and siblings to dementia patients were interviewed. Most of the participants (12) were married with children and even those who were single, co-habituating and separated had children and other relatives to fend for. Also concerning caregivers' relationship to patients, it was identified that more mothers were caregivers. Other relationships found were, father, brother, sister, uncle and paid person to do the caregiving job.  Challenges of family caregivers of dementia patients The challenges of family caregivers of dementia patients faced were grouped into three main themes; social challenges, psychological challenges and economic challenges. See Figure 1 Social challenges of family caregivers In this paper we examined social challenges family caregivers of dementia patients face and they different on various societal levels.

Mockery
Pertaining to the social challenges, there are many vulnerabilities that caregivers face in executing their duties. These put a dangerous impediment to their health and makes them prone to various health conditions. Mockery can create a burden and stress on their life and makes them shield from community activities, with little faith of disbelief in themselves.
Some participants view of the society mocking them were expressed as:

Economic challenges
Here it was imperative to assess the economic demands of the caregivers and how it has been achieved.

Inability to work
Family caregivers managing patients with mild conditions expressed they can work within the day but those with patients whose conditions are severe made it emphatic they were not unable to work, and some stated they had meaningful employment until the conditions of their relatives started. The participants 13 expressed their concerns as:  Physical needs of family caregivers The research participants were asked some questions that made it possible to get a concise feel of their physical needs; some daily activities they perform as family caregivers.
The caregivers explained patients who had mild conditions assisted in the caregiving like their oral care, physical cleanliness of the patient and feeding but, patients with severe conditions made it tough for caregivers, as they must perform almost all the activities. The activities performed by caregivers were different depending on the patient's conditions and how severe or serious the condition of the patients. The attention given to the males is more than the females as most of the males were reported to be aggressive because they become disoriented, having difficulty recognizing friends or family members, identifying what time or day it is, or even misplacing items and accusing others of theft whereas the females were antisocial due to the mood swings.

Personal Assistant
Some of the family caregivers expressed their major need in respect to the duties they perform daily would be a personal assistant. Some participants recounted:

Social challenges of family caregivers
In line with other previous studies [26]; [27]; [28], this study found evidence to show that family caregivers are faced with diverse social challenges including 20 health, public backlashes and community stigmatization.
Findings from the study indicates family caregivers, experience physical high blood pressure, inability to sleep, low participation in any physical activity, developing heart disease and weight reduction as reported. Family caregivers experiencing high blood pressure can be proven by a study of [26], where it was known active family caregivers suffer from disease like high blood pressure and many others.
Some of the caregivers expressed their views that they believe they develop blood pressure as a result of over talking and thinking that their care recipients sometimes makes them do, especially cleaning the care recipient and the person urinating on him or herself the next moment. Contemporary documented evidence indicates that one serious physical health concern with caregiving is greater risk of developing cardiovascular disease [29]. The present study demonstrated also that family caregivers of dementia patient develop cardio issues as a result of their care giving duties. This study sums up the notion that caregivers suffer from depression and other negative mental health and physical health problems at higher rates than non-caregivers as documented in studies [30]; [8].
This study also revealed that most of caregivers do not have enough sleep and have limited time to rest, it becomes needful as a physical measure that family caregivers find time to sleep and relax. Participants noted that they needed to sleep and take breaks in their roles as family caregivers. This confirms the recommendation by the [31] that caregivers should be taking periodic breaks to do something that gives them enjoyment and peace, even if it is only a 10-minute break, can help recharge them for the rest of the day. Having enough sleep and rest is also an effective way of releasing stress, which [32] posit can lead to compromised functioning of the immune system and more specifically, increase the 21 healing time for standardized wounds.
In consistent with previous research family caregivers of dementia people face several public backlashes [33]; [27]; [28]; [34]. The public backlashes include ridicule, mockery and social stigma family caregivers of dementia patient face as a result of caregiving duties. Many societies in Ghana regard dementia as an ageing related disease which is attributed to sorcerer or witchcraft and so those who are related to the patients are victimize and neglected by community members.
Caregivers could not attend various social gatherings due to their role in caregiving for their dementia relatives. The study emphasized that caregiver's social life had suffered, as most of them were unable to go out, even to attend important functions like marriages. Ultimately, the fact that the time when caregiving duties are getting more demanding, is likely to coincide with less social support being readily accessible, is one of the most unfortunate social outcomes of the caregiving experience [35].

Psychological challenges of caregivers
From the findings of the study, family caregivers experience a lot of psychological challenges including stress and agony. This is as a result of overthinking about the relative's condition and finance about their hospital bills due to lack of social support and inadequate social intervention programmes. They are mostly psychologically distressed as they have redrawn from societal gathering and shrink to their inner beings due to the caregiving duties. This finding mirrors the reports from [28] who reported that patients and their caregivers in Ghana expressed that the experiences of family caregivers of dementia patients face a lot of emotional trauma. The mental capacity that motivate people to achieve goals and perform certain activities defined the boundaries for was meant to be psychological needs.

Economic challenges
Many researchers have been specifically concerned with the contributions made by informal caregivers and how employment impinges on these contributions [36]; [37]; [38]; [39]; [40]. The findings from this study show that caregivers have a lot of financial constraints arising from unemployment. This is consistent with a study from [41], which indicates, finance was a matter of concern for carers, in terms of expenditure associated with travelling expenses, special diets, clothing, laundry, continence materials, holidays, and charges for services. At other times, it was expressed in terms of restrictions on income through reduced or lost employment and/or the interaction between benefit entitlements. According to [42], caregivers needed assistance for the financial burden of the illness and is very consistent with our findings as caregiver recounted the support they needed financially to cater for drugs and scans of their patients. Several studies have reported the cost of treatment and services as a major barrier to service use in dementia [43]; [44] and was in accordance with the findings of our study which indicated, caregivers cry a lot in providing basic medical cost for the treatment of the condition, like scan, laboratory and the high cost of drugs. The decision to undertake caregiving duties can result in substantial financial penalties to the primary caregiver and their family [45].

The Needs of Family Caregivers of Dementia Patients
The study found various needs of dementia caregivers including physical, social and psychological needs. These needs are in line with other previous studies [34]; [41]; [42]. The physical needs comprise of food, water, shelter and clothing as detailed in Abraham Maslow's hierarchy of needs. The social needs according to a study by [13], are the needs met through satisfactory relationships -relationships with From the study, it was known that caregivers need includes, free time to relax their brain and be mentally fit, someone to talk to about their emotional behaviour and also someone to confide in especially the clergy to boost their emotional wellbeing and sort strength from the faith-based approach. They needed that sleep due to some psychological stress like grief, sadness, anxiety fear and embarrassment they face as a result of their caregiving duties. The findings from this study is consistent with a study by [34] which indicated, most caregivers reported psychological symptoms. This finding is consistent with the findings of [42] that caregivers reported of having psychological distress with some emotional responses including grief, sadness, anxiety, anger, guilt, blame, fear and embarrassment. These results also support previous research that has shown that emotional experiences are the biggest challenge faced by caregivers [47].

Acknowledgement
We give credit to the study participants for sharing the study data and the authors whose works were accessed.

Availability of data and materials
The corresponding author will release all data set on reasonable request.

Competing interest:
The authors state that there are no potential competing interest. Also, there was no financial support for the research, authorship and/or publication of this article.

Consent for publication
Not applicable

Ethical Statement
The research obliges to all ethical responsibility and was granted ethical clearance from the Committee on Human Research, Publication and ethics from School of Medical Sciences/Komfo Anokye Teaching Hospital and Kwame Nkrumah University of Science and technology. With the clearance number CHRPE/AP/070/19. The participants were assured of the confidentiality and anonymity of the data and informed consent was sorted from them before the study started.

Funding
No specific grants were received to undertake this research.

Author contributions
The first author drafted the paper, helped in the designed of the study, developing study tools, and participated in data analysis. The second to fifth authors helped design the study and participated in data collection. The rest of the authors helped with data analysis, proofreading and referencing.