An Integrative Review of the Literature Exploring the Psycho-social Impact of Dementia upon Older Persons
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An Integrative Review of the Literature Exploring the Psycho-social Impact of Dementia upon Older Persons
Introduction and Background
Dementia can be characterised as a progressive illness, which distinguishes by a decline in cognitive function and, thus, losing the ability to perform daily activities (NICE, 2013). Dementia is progressive, meaning that symptoms are gradually heightened.Therefore, the impairment in cognitive functioning is often accompanied by the deterioration of emotional control and social behaviour (NICE, 2013). Statistics have shown that there is a significant growth in the number of diagnoses of dementia in the UK and nationally. According to Prince et al(2014), it is estimated that there are more than 570,000 people with dementia in the UK, and in the next 30 years it is estimated to become more than double. Evidently, dementia has become a critical and important issue globally that leads to rise in demand for care needs and social costs related to the long-term condition (Prince et al, 2014). Family and caregivers often find themselves becoming second patients due to the quality of life of those they look after. The experience of the caregivers is mostly negative than positive connecting to the high demand of care required. (Brodatyand Donkin, 2009). For example, Constable (2014) in his book “Walking alongside a person with Dementia” outlines several carers’ stories and comments that some caregivers were frustrated and, hence, became emotionally disengaged.
The term psycho-social is often linked to the nature of combined psychological and social factors that can have an impact on the physical and mental wellbeing of individuals. Ablitt et al.(2009) study is among the many studies that show the level of emotional distress and burden experienced by dementia patients and their caregivers as well as psycho-social factors that are stimulated as a result. Other than physical and organic changes, old age has psychological effects. Elderly service users often feel abandoned, emasculated, and striped away from their independence as they are habitually treated as lower group and are denied their basic freedom and rights that we as human beings are entitled to (WHO, 2017). Indeed, many countries extensively employ chemical and physical restraints in older people care homes denying them their right to freedom and choice.
The intended structure outline for this integrative review will read as follows.A systematic outline of research strategy process will be followed by the studies designated for the review. These studies alongside with justifications that will be used for their selection will be acknowledged in tabular form. In addition, each of the studies analysed will have its methods outlined gaging the systematic stages of the research process. The key findings of the investigations will also be addressed and summarised. Further, the methodological limitations will be critically evaluated with brief explanations given in relation to the limitations. Correspondingly, the studies selected and evaluated in the literature review will be summarised and incorporated using matrices which will be included as an appendix. After, the key findings of the chosen studies will be evaluated in relation to consistencies and/or inconsistencies followed by explanations for both. In addition, areas, such as the nursing and multi-professional and clinical implications of the evaluated findings will be acknowledged. The conclusion will provide a combination of the contents addressed in the integrative review. Subsequently, the gaps in clinical and research knowledge will be identified, incorporating suggested directions for future research in the nursing area.
Search Strategy Process
The search databases used to yield the research were CINACHL and PubMed. CINACHL was chosen as it is the largest and well-known database used commonly amongst nurses and healthcare professionals around the world as a research tool to conduct health care research. PubMed (Medline) was used as a result of the conveniences in accessing clinical and biomedical literature related specifically to the selected area chosen. The search terms incorporated to guide the research were related to the adult field specific topic defined in the literature. As a result, the search terms used were “Psycho-social impact of Dementia” and “Care homes experiences”, upon older persons.
The search inclusion and exclusion integrated as part of the search refinement related to a time parameter which was 2008-2017 in order to enable access to up to date literature in the nature of the specific area chosen. However, an explanation can be given related to choosing literature in the early part of the millennium. The aim was to enable integration of a mixture of perspectives related to the psychological burden associated to dementia patients, like sadness and loneliness and to evaluate whether the level of burden is still on an increase or has decreased over the last years.
In addition, the search inclusion covered aspects such as selecting studies specifically done in the UK due to the department of health resources and clinical guidelines that are accessible to that country. Still, a few international studies were incorporated to the research due to nature of the field-specific topic being a global crisis around the world. Mainly quantitative studies were collected.
The search specifically focused on the psychosocial issues associated with dementia home care users as well as the prevalence rate of their emotional burden. However, a short number of studies included phenomenological studies that focused on life experiences of dementia carers. The quantitative predominantly fixated the psycho-social impacts and factors of dementia home care users. The justification related to scarcity in the number of phenomenological qualitative studies may indicate a gap in research knowledge related to life experiences of dementia carers.
Evaluation& Integration of the Evidence
The integrative review included a total of 9 studies of which 4 were mixed studies, 4 quantitative, and 1 qualitative study
( Refer to Table 1 overleaf,p.g6 for an outline of studies selected and their area of investigation). From 25 related studies, the 9 studies were chosen through an extensive search and critical analysis of relevant literature in the area.
| Investigator(s) | Study Design/Approach | Study Aim/Purpose | ||
| Prince et al., (2014) | Cross-sectional study/mixed methods | Explored estimates of people with dementia and their levels of care demands.
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| Gavrilova et al, ( 2008) | Randomised ControlTrial | Evaluated the effectiveness of the10/66 caregiver inventions among persons with dementia and their respective carers. | ||
| Ablitt et.al.,( 2009) | Mixed methods
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Explored dementia patients and carers levels of awareness about their respective levels of anxiety and depression. | ||
| Sutcliffe ,et al ( 2015) | Phenomenological study | Explored views and life experiences of the dementia patient’s family during their care giving time.
Explored psychology of persons with dementia and also carers’ experiences when giving support and care services. |
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| Shumacher, ( 2010) | Cross-sectional study | Explored the perceptions and lived experiences of leisure for caregivers of adults with Alzheimer’s disease whilst parenting a dependent child | ||
| Iavarone et al., ( 2014)
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Correlational study/ study | Examined the relationship between reduced psychological distresses in elderly dementia patients with the coping strategies implemented by a group of caregivers of persons with Alzheimer’s disease. | ||
| Chiao et al, ( 2015)
|
Systematic review | Examined and analysed issues associated with caregiver burden and their psycho-social impacts on the dementia old persons. | ||
| Hattink et al, ( 2015)
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Randomised Control Trial | Evaluated the effectiveness of the user-friendliness and the impact of the START E-learning course with informal caregivers, volunteers, and professional caregivers in improving dementia person’s well being | ||
| Orgeta&sterzo ( 2013) | mixed methods | Examined the relationship between stress and burden related to caregiving, as well as the sense of coherence and self-reported anxiety and depression | ||
3.1 Psycho-social and physiological impacts of dementia upon elderly persons (Ablitt et al, (2009) ;( 2015); and Chiao et al,( 2015))
Exemplars of the mixed studies selected in the table overleaf on (pg. 6) are as follows:
Ablitt et al.( 2009) conducted a control group trial which was fixated on the persons with dementia’ level of awareness of their carers’ levels of anxiety and depression. A non-probability method of purposive sampling was integrated which included (n-40) participants. One of the formulated dementia group consisted of 22 participants who were dementia patients and their carers. The control group involved 18 participants with arthritis and their respective carers. In the dementia group 22 pairs of participants were diagnosed with mild to moderate dementia, and their caregivers were conscripted through a UK National Health Service.
To sustain the sample effectiveness, the support groups recruitment was stretched over a wide geographical area while considering age, mean, gender, carer relationship, spouse, siblings, and residence. Questionnaires served as a quantitative mixed method of data collection, while the Hospital depression scale (HADS) formulated by Zigmond and Snaith(1983) helped to provide measure of psychological health and measure anxiety and depression in patients and their carers. Carers involved in the study were to complete the standardised HADS in order to give them the flexibility to rate their own psychological health ( Ablitt et al ., 2009). The Memory Functioning Subscale of the Memory Awareness Rating Scale (MARS) developed by Clare et al . (2002) was also incorporated to evaluate the insights of memory functioning. By stimulating self-ratings of the persons with dementia and the observers’ ratings from their carer’s, data was obtained (Ablitt et al ., 2009). Carers were also given the platform to be able to rate dementia patients’ daily memory performance.
The HADS indicated higher levels of anxiety and depression and insufficient amount of evidence was obtained from the persons with dementia and their caregivers concerning their levels of awareness of their depression and anxiety. (Ablitt et al., 2009). The aspect of awareness of carer’s anxiety and psychological health correlated in the control group of participants with arthritis and no memory deficits. No correlation was found between the level of awareness of the persons with dementia in relation to their carer’s psychological health as well as in their perceptions towards their own memory deficits and functional abilities which were rated by their respective carers. The first group of participants was aware of the level of emotional distress to their respective carers and possible psychological impacts. The second group was also similarly aware of the psychological distress associated with the caring role, but the perception was stemmed from the idea that psychological complications were stimulated by other individualised factors, probably due to lack of awareness( Ablitt et.al., 2009). The third group of participants was completely unaware and perceived that carers are not emotionally impacted by the caring role; this can be tied to the lack of consciousness towards the psychological morbidities associated to the caring role. Orgeta&Sterzo (2013) examined the relationship between stress and burden related to caregiving with increased anxiety and depression to their dementia patients and their findings were supported by Ablitt et.al. (2009). Emotional ramifications of incidents where a person with dementia may witness the level of distress of their carer’s or family member may trigger and stimulate some levels of awareness in memory.
Prince et al (2014) undertook an Expert Delphi consensus to update a previous study on costs and prevalence estimates of dementia in the UK. Through a systematic literature review and evidence synthesis, related studies were identified and exclusion was done while giving reasons. 3 phases of the Delphi consensus were carried out to reach a consensus. At first, the drafted prevalence questionnaires and background evidence versions were sent to the expert panel for suggestions and comments to help in formulating the final versions. Individually, the expert group members were given review materials to provide judgment and answers to the questionnaires without consulting. Acquired estimates of the prevalence of dementia by age and gender-specific were applied to calculate and estimate standardized dementia prevalence in people with 60 years and above. From the estimate, an increase in dementia cases in elderly people was noted when compared to the previous study.
A methodological key strength of purposive sampling being a non-random type of sampling technique is that a balance can be maintained in terms of the number of participants selected and included in the study as it does not require a supported underlying theory or set a number of participants. In addition, it is also cost and time effective (Etikan et al., 2015). However, the key methodological limitation of this technique is the nature of being non-random.There is higher risks to exposure errors in judgment made by the researcher. Besides, there can be difficulties with ability to generalise findings that are not representative of the total population. Thus, there will be higher risks of bias and low levels of reliability (Leslie and McCabe, 2008)
An example of the citation of the systematic review in the table overleaf on (pg. 6) is as follows:
Chiao et al. (2015) directed a systematic review that focused on identifying impacts of factors contributing to caregivers’ burden amongst informal dementia caregivers living in the community. The review consisted of four databases namely; PubMed, PsycINFO, CINACHL, and the Cochrane Library.This was done in order to access a wide range of different studies that were relevant and published in 2003-2012. The inclusion criteria focused on types of study designs that were collated in the review which consisted of systematic reviews, qualitative studies, cross-sectional studies, longitudinal, cohort, and observational studies, whilst the exclusion criteria was fixated on articles which included intervention studies that were institution-based research, delivered informal care for persons with memory impairment rather than dementia. Articles with less substantial information or measures of aspects of caregivers’ burden were excluded. The outcomes of the groups were split into distinctive 3 thematic categories which were stemmed around common characteristics like types of dementia, caregiver relational association to dementia patients, living arrangements, caregiver burden measurements, and other factors. Characteristics also included behavioural, psychological, and physiological factors. The summary of included studies was clearly identified. There were totally 21 studies selected. The Zarit Burden Interviews (ZBI) developed by Zarit(1980) was used to measure and assess the level of burden in informal caregivers of person with dementia.
The main data collated from 12 out of the 21 studies focused on caregivers. It was highlighted that the main types of family caregivers were children and relatives , which was a common factor in 9 of the studies. Spouses were found communal in the caregiver role in 8 studies. The key findings identified that the co- residing rates of informal caregivers and persons with dementia ranged from 57%- 100%. In addition, it was identified that age and relationship between the persons with dementia and caregiver were correlating factors towards caregiver burden. 2 studies emphasised that informal caregivers of younger nature were at risk of higher rates of burden. However, other studies argued that older caregivers were more susceptible to burden. High rates of anxiety and depression were also reported as contributing psycho-social factors of caregiver burden amongst dementia caregivers. It was illustrated that primary factors associated with caregiver burden were related to behavioural complications and psychological factors in terms of the severity of dementia diagnoses of the person. The main methodological strength of the systematic review is that studies selected effectively investigated and addressed the main factors of caregiver burden amongst informal caregivers. The literature was substantial in providing knowledge and education towards caregivers’ burden of informal caregivers in the community. However a potential limitation of the systematic review was the use of the Zarit Burden Interviews ( ZBI).This was a result of the outcomes that terms, such as “ stress”, “strain”, “depression” can be defined in different ways related to the concept of caregiver burden. This hindered the ability to distinguish the main outcomes of variables in the studies at the time of screening process. Ballesteros and Martin( 2012 ) supported this when they argued that the self-checklist format used in the ZBI is very limiting, and that factors related to the positive aspects of care given are usually not addressed or identified.
3.2 Phenomenological perceptions and knowledge of Caregiver Burden (Schumacher (2010); Sutcliffe et al ( 2015);
Exemplars of the citation of one of the qualitative studies in the table overleaf (pg. 6) is as follows:
Sutcliffe et al.( 2015) carried out a phenomenological study on the results of a focus group through questioners and interviews that involved persons with dementia and the carers, exploring their experiences while attending dementia patients. People with dementia (n = 27) and carers were among the 3 focus groups involved in the study undertaken. Topics that allied with service receipt, experiences, service development, and information sharing were researched. The results showed that several participants encountered delays or difficulties in receiving and accessing dementia diagnosis and care. Considerably, training provision, relevance of information, access to proper advice accessibility, and flexible and reliable services are important. study showed the increasing number of people with dementia leading to increased care demand: This and the informal care unavailability with the increased need for care services highlight the need for transformation of dementia care services in UK.
Schumacher (2010) piloted a Hermeneutical phenomenological study which explored the perceptions and lived experiences of leisure for caregivers of adults with Alzheimer’s disease whilst parenting a dependent child. A non-random method of purposive sampling was incorporated which included (n-6-10) participants that had met the inclusion criteria social demographics which were as follows: Dependent Adult with a type of dementia, a Dependent adult that is a parent to the caregiver, primary and secondary caregivers, gender and financial status. Social demographics also included the age of the participants selected. The main methods of data collection were semi-structured interviews through the use of tape recorders and transcripts which were used to explore the phenomenon in terms of the lived experiences of participants. The study findings generated a number of themes, such as “Creation of leisure space” and “Leisure and balance”. The “ creation of leisure space “ suggested that participant labelled physical and psychological distance away from stress , which illustrated the idea that participants had felt less burdened through the utilisation of quality leisure time, such as swimming and going to gym as coping mechanisms to combat caregiver stress. In addition, “Leisure and balance “illustrated the idea that leisure is vital for the maintenance and balance of a healthy lifestyle.
The methodological strength of these studies is the use of semi-structured interviews which help to generate sufficient and related to phenomenon investigated in the study data. However, a methodological limitation of the study is the purposive sampling as non- random technique due to the high risks of exposure to risks and errors as wells as the diminutive level of reliability alongside with an increased risk of bias, as similarly was argued by Leslie and McCabe (2008).
3 .3Strategies and interventions programmes for Caregivers (Hattink et, al (2015)
An example of one of the quantitative studies in the table overleaf (pg. 6) is as follows.
Hattinket al.( 2015) conducted a random controlled trial which evaluated the effectiveness of the user-friendliness and the impact of the START E-learning course with informal caregivers, volunteers, and professional caregivers. The sample size comprised ( n-146).Participants were randomly selected, which included informal caregivers ( 72/142, 50.7%), volunteers( 24/142, 16.9%), and professional caregivers ( 46/142, 16.9% ). Participants complete a baseline questionnaire online; completed questionaires were randomised through the experimental group or control group. The demographic groupings of participants were selected based on who they were and the limited knowledge they had on Dementia. Descriptive analyses to collate the baseline of the characteristics of the study population as well as descriptive statistics was used to investigate the usefulness and friendliness of the STAR training programme. The study findings illustrated that participants had a positive outlook on caregiving after taking part in the STAR Training programme and had felt that the training provided them with sufficient amount of knowledge related to the maintenance of emotional feelings amongst informal caregivers and volunteers. In addition, aspects, such as empathy and compassion have been improved amongst professional caregivers after attending the training.
The methodological strength of the study is the use of random sampling as an experimental design as emphasised by the National Institute for Health and Clinical Science. Its strength lies in that it helps to provide the sufficient and substantial amount of scientific evidence that can be used in clinical practice. The methodological limitation of the study was the use of electronic questionnaires as they did not provide enough evidence towards the effectiveness of the training programme due to lack of accessibility. As Jones, Baxter and Khanduja (2013) argue, there is a higher risk of low accessibility amongst subjects, thus stimulating an increased rate of non –responses. The studies selected for the integrative review have been communally unified and summarised in the matrices included as an Appendix (Refer Appendix1).
4.0 Commentary on Key Findings of the Studies Reviewed
Overall analyses of the studies indicated that the differences of the findings transversely were outweighed by the similarities. For instance, in the Oregeta&Sterzo (2013) study the similarities were focused on the psychological impacts of burden related to higher rates of anxiety and depression. Likewise, in the investigation conducted by Ablitt et al., (2009) the measure of the outcome of the Hospital Anxiety Depression Scale (HADS) indicated high rates of anxiety, despite the disparity that there was insufficient amount of evidence related to depression amongst caregivers. Another difference across all studies is the aspect of cognitive impairment and levels of awareness amongst people with dementia. This was a factor that was not pronominally addressed or considered as one of the factors contributed to caregiver burden across all of the studies apart from the investigation conducted by Ablitt et al.(2009). This suggested that the perceptions of psycho-social factors of caregiver burden amongst researchers differ as a result of the findings that are collated and the type of background contextual knowledge they have related to the topic area. In addition, another correspondence is that in most of studies conducted, caregiving is primarily perceived as negative amongst caregivers. Nevertheless, investigators, such as Hattink et al. ( 2015) and Gavrilova et al. ( 2008) effectively illustrated the idea that carers’ outlooks can be changed positively through the use of effective training programmes that provide appropriate education related to caregiving. Sutcliffe.et al. ( 2015); Prince et al (2014) observed poor care services, like delays or difficulties in receiving and accessing dementia diagnosis and care. However, this can be addressed by transforming dementia care services in UK. Chiao et al. (2015) observed higher rates of burden among young and old informal caregivers; this can affect the psycho- social of dementia patients. Lavarone et al. ( 2014) advocates for the use of coping strategies implemented by a group of caregivers. Schumacher ( 2010) illustrated that caregiver stress can be reduced through utilisation of quality leisure time, and that leisure is vital for the maintenance and balance of a healthy lifestyle both, to dementia patient and carers (see appendix 1).
5.0 Conclusion & Research /Clinical Recommendations
This integrative review has designated 9 research investigations (4 mixed studies, 4 quantitative, and 1 qualitative study) in a subject area related to psycho-social impacts of dementia upon the elderly persons. The findings of the studies highlighted more similarities related to psychosocial relations to caregiver’s burden than differences which focused on coping strategies and interventions (Lavarone et al., 2014). In summary, there appeared a fewer number of phenomenological qualitative study which may indicate a gap in clinical knowledge. Therefore, future research should focus on gaps in clinical and research knowledge as to experiences of individuals living with dementia. Besides, the caregivers’ role should be further researched and analysed.
Thus, suggested directions of improvements would include the idea of developing further discussions related to the perceptions and lived experiences of individuals living with dementia and caregivers.This would facilitate providing a balanced perspective that would help to empower and educate future nurses to familiarise themselves with literature associated to dementia care to ensure better care services to their patients (Clara et al., 2002). In addition, more awareness about dementia and care would be created through provision of more in-depth educational training programmes to the society.
References
Ablitt , J.et al ( 2009) ‘International Journal of Geriatric Psychiatry’ , Awareness of carer distress in people with dementia, 25(12),pp. 1246-1252.
Brodaty, H. and Donkin, M. (2009)’Dialogues in Clinical Neuroscience’, Family caregivers of people with dementia, 11(2), pp.217-228.
Campbell, P.et al (2008) ‘International Journal of Geriatric Psychiatry ‘, Determinants of burden in those who care for someone with dementia, 23(10), pp.1078-1085.
Chiao , C . et al ( 2015) ‘ International Nursing Review ‘ , Caregiver Burden for Informal caregivers of patients with dementia: a systematic review , 62(3),pp.340-350.
Clara, L.et al ( 2002) ‘ Neuropsychological Rehabilitation ‘, Assessing Awareness in early Alzheimer’s disease: Development and piloting of the Memory Awareness Rating scale , 12 (4),pp. 341-362.
Constable, G., 2014. Carers’ Stories: Walking Alongside a Person with Dementia. Cambridge Scholars Publishing.
Etikan, I.et al ( 2016) ‘ American Journal of Theoretical and applied Statistics ‘, Comparison of Convenience sampling and Purposive Sampling , 5(1),pp.1-4.
Gavrilova, S. et al (2009) ‘International Journal of Geriatric Psychiatry’ , Helping carers to care – the 10/66 Dementia Research Groups randomised control trial of a caregiver intervention in Russia, 24(4),pp.347-354.
Hattink, B.et al (2015) ‘ Journal of Medical Internet Research’, Web Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers : Results from Randomised Controlled Trial in the Netherland and the UnitedKingdom, 17(10),pp. e-241- e- 241.
Jones, T., Baxter, M. and Khanduja, V. ( 2013)’ Royal College of Surgeons ‘, A quick guide to survey research, 95(1),pp.5-7.
Lavarone, A.et al( 2014) ‘Neuropsychiatric Disease and Treatment ,’ Caregiver burden and coping strategies in caregivers of patients with Alzheimer’s disease, 29(10),pp.1407-1413.
Leslie, C. and McCabe, S. (2008) Understanding Nursing Researh.2ndedn. London: Library of Congress Press.
National Institute for Health and Care Excellence (2013) Dementia independence and Wellbeing. Available at :https://www.nice.org.uk/guidance/qs30/chapter/Introduction-and-overview ( Accessed :15 November 2016).
Orgeta ,V. and Sterzo, E. ( 2013)’ International Journal of Psychogeriatric ‘, Sense of coherence, burden and affective symptoms in family carers of people with dementia, 25(6),pp. 973-980.
Shumacher,L. ( 2010) ‘ Theses and Dissertations ‘ , The caregivers journey : a phenomenological study of the lived experience of leisure for caregivers in the sandwich generation who care for a parent with dementia ,MA( Master arts ) thesis, University Iowa ,2010. Doi: http://ir.uiowa.edu/cgi/viewcontent.cgi?article=1784&context=etd
World Health Organisation (2017) Dementia Key Facts. Available at: http://www.who.int/mediacentre/factsheets/fs362/en/ (Accessed: 10 December 2016)
Zarit, S. et al (1980)’ The Gerontologist’, Relatives of Impaired Elderly Correlates of Feelings of Burden, 20(6),pp.649- 655.
Zigmond, A. and Snaith, R.( 1983) ‘Acta Psychiatric Scandinavia ‘, The Hospital Anxiety and Depression scale , 63(6),pp.361-370.
Bibliography
Cooper, C. et al ( 2010)’ Journal of Affective Disorders’ , The determinants of family carers abusive behaviour to people with dementia : results of the CARD study , 121(1/2),pp. 136-142.
Donnellan,J, W., Bennett, K. and Soulsby,L.( 2017) ‘ Aging and Mental Health’ Family close but friends closer: exploring social support and resilience in older spousal dementia carers , 21(11),pp.1222-1228.
Milders , M.et al ( 2013)’ Geriatric Nursing ‘, Cognitive Stimulation by caregivers for people with dementia, 34(4),pp.267- 273.
Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M., Comas-Herrera, A., Wittenberg, R., Adelaja, B., Hu, B., King, D. and Rehill, A., 2014. Dementia UK: -overview.
Stagg, B. and Larner , A.(2015) ‘Progress in Neurology & Psychiatry ‘, Zarit Burden Interview : pragmatic study in a dedicated cognitive function clinic , 19(4),pp.23-27.
Sutcliffe , C.et al ( 2015) ‘ Dementia’, People with Dementia and carers experiences of dementia care and services: Outcomes of a focus group study , 14(6),pp. 769- 787.
Sutcliffe , C.et al ( 2016)’ International Journal of Psychogeriatric ‘ , Experience of Burden in Carers of people with dementia on the margins of long – term care, 31(2),pp. 101-108.
APPENDIX 1
A unified Collective Summary of Studies on the Psycho-social Impacts of Dementia upon Older Person
| Investigators | Study design/approach & purpose | Sampling method, (n-) & socio-demographic details | Method(s) of data collection | Key findings |
| Prince et al, (2014) | Cross-sectional study / mixed studies
Evaluated estimates of people with dementia and their levels of care demands |
(n-57) topic related studies of dementia prevalence | Methods of data collection included Expert Delphi consensus, questionnaires. | Comparing the obtained estimates to the previous study results, an increase in dementia cases in elderly people.
|
| Gavrilova et al, ( 2008) | Randomised Control trial ( sing blind parallel group )
The evaluated efficiency of 10/66 caregiver inventions among persons with dementia and their respective carers. |
(n-60) family caregivers of persons aged 65 and over diagnosed with dementia. | Data collection included the Zarit Burden Interview (ZBI), Carer Psychological distress scale ( CPDS) , Carer Mental health self-reported questionnaires, and Caregiver Quality of Life scale.
,
|
Caregivers in intervention groups showed larger statistical significance net improvements during 6 months follow up in Burden compared to controlled groups.
Low-level interventions were deemed to be less effective.
|
| Investigators | Study design/approach & purpose | Sampling method, (n-) & socio-demographic details | Method(s) of data collection | Key findings |
| Ablitt et al., (2009) | Control group trial focused on the persons with dementia level of awareness of their carer’s levels of anxiety and depression. | Non-probability method of purposive sampling integrated included (n-40) participants, 2 groups were formulated: one being the dementia group and the other the Arthritis control group.
|
Methods of data collated,
Questionnaires, Memory Awareness Rating Scale (MARS), and the Hospital Anxiety Depression Scale ( HARDS) |
HADS deemed as substantial (, F, 1, 38) = 81.80, P<0.001, indicated higher levels of anxiety and depression. Insufficient amount of evidence of a person with dementia levels of awareness of their carer’s level of depression. |
| Schumacher ( 2010) | Hermeneutical phenomenological study explored perceptions, lived experiences of leisure for caregivers of adults with AD | -6-10) inclusion criteria met. Social demographics were as follows: Dependent Adult with caregivers, gender, and financial status.
|
Methods of data collection included structured interviews, such as tape recorders and transcripts. | Creation of leisure “physical and psychological distance away from stress”.”
The significance of balance incorporated into the lifestyle of caregivers associated to the adaptation of healthy coping mechanisms to reduce levels of caregiver burden. |
| Investigators | Study design/approach & purpose | Sampling method, (n-) & socio-demographic details | Method(s) of data collection | Key findings |
| Sutcliffe ,et al ( 2015) | Phenomenological study
Examined dementia patients experiences
|
(n-27) carers of a person with dementia. | Methods of data collection comprised of: a sense of coherence scale (SOCS), Questionnaires, Relative Stress Scale (RSS), the Hospital Anxiety and Depression scale (HARDS) | High rates of anxiety and depression were reported with a lower rate of a sense of coherence.
Dementia patients encountered delays or difficulties in receiving and accessing dementia diagnosis and care. |
| Hattink et al., ( 2015)
|
Randomised Control Trial
Evaluated the Effectiveness of the user-friendliness and the impact of the START E-learning course with informal caregivers, volunteers, and professional caregivers. |
Sample size comprised (n-146).
Participants included informal caregivers ( 72/142, 50.7%), volunteers( 24/142, 16.9%), and professional caregivers ( 46/142, 16.9% ) in the Netherlands and the UK. |
Data collection included
Random sampling, questionnaire, and descriptive analyses |
Participants reported positive outlook on caregiving after taking part in the STAR Training programme. Training provided sufficient amount of knowledge related to the maintenance of emotional feelings amongst informal caregivers and volunteers.
|
| Investigators | Study design/approach & purpose | Sampling method, (n-) & socio-demographic details | Method(s) of data collection | Key findings | ||
| Iavarone et al., ( 2014) | Correlational study
Examined the relationship between Psychological distress and coping strategies implemented by a group of caregivers of persons with Alzheimer’s disease. |
(n-86) caregivers of a patient with Alzheimer’s disease( AD) | Methods of data collection included Barthel Index self-report , Caregiver Burden Inventory( CBI), the State-Trait Anxiety Inventory ( STAI Y-1 and y-2 ), and Zarit Burden of Inventory scale ( ZBI). | The higher the level of dementia severity, the higher the risk of burden amongst woman than elderly.
Friedman analysis indicated a significance amongst 5 CBI sections ( [ f(4.3)=45. 611; P< 0.00001 Findings also illustrated that developmental scores were higher than physical, social, and emotional scores. |
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| Chiao et al, ( 2015) | Systematic review Examined and analysed factors associated withcaregiver burden amongst informal caregivers in the community, through the use of mixed studies. | Four databases that were integrated into the review which was PubMed, PsycINFO, CINACHL, and the Cochrane Library | Methods of data collection included online questionnaires and descriptive analysis | Co- residing rates of informal caregivers and persons with dementia 57%- 100%.
Higher rates of burden among young and old informal caregivers |
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| Investigators | Study design/approach & purpose | Sampling method, (n-) & socio-demographic details | Method(s) of data collection | Key findings |
| Orgeta & Sterzo ( 2013) | Cross-sectional study
Examined the relationship between stress and burden related to caregiving, as well as the sense of coherence and self-reported anxiety and depression
|
(n-170) carers of a person with dementia. All participants in the study were telephoned t by local voluntary sectors organisations in the UK who are specialised in providing support services for carers of a person with dementia.
socio demographics included aspects such as gender, age, level of education, relationship to the patient, marital status and the hours |
Methods of data collection comprised of: a sense of coherence scale (SOCS), Questionnaires, Relative Stress Scale (RSS) and the Hospital Anxiety and Depression scale (HARDS), as well as multiple linear regression analysis used to examine the relationships between self-reported anxiety and depression. | High rates of anxiety and depression were reported with a lower rate of a sense of coherence.
The correlation between stress related to caregiving and depressive symptoms were indicated by carer’s self-reported sense of incoherence. Results illustrated by the first set of analysis between SOC and RSS indicated that RSS showed a negative correlation related to caregiver SOC |
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