Caring for a family member with dementia is complex, with outcomes depending on numerous factors. The experience differs based on the caregiver's relationship to the care recipient, as well as cultural and social contexts. While research often focuses on the burden and stress of caregiving, care can also have positive aspects. Motivations for providing care influence both the caregiver and care recipient's well-being. Informal caregiving is especially challenging in South Africa due to poverty, lack of infrastructure and services, and changing cultural attitudes towards elders. The experiences of both caregivers and those with dementia would benefit from more nuanced understanding of their diverse contexts and perspectives.
A critical assessment of the research literature that explores the disclosure...GERATEC
Being diagnosed with dementia can impact on an individual’s emotional, vocational, spiritual, physical, social, intellectual and personal dimensions of wellness (Montague, 2013). The stigmatisation that comes with the diagnosis can be as devastating as the disease itself. For this reason alone, seeking a diagnosis when suspecting that there could be something wrong with one’s cognitive functioning, is not a simple or easy decision.
Christine Bryden, in her book “Dancing with Dementia” (2005), makes the statement “It took me three years before I could speak openly about my diagnosis, overcoming the hopelessness and depression that exacerbated my dementia and took me on a downward spiral of dysfunction” (Bryden, 2005, p39).
The psychological impact of a diagnosis (Lee et al., 2014) is severe, taking some individuals up to six months to adjust and cope with the feelings of loss before they can start to create new coping strategies and mechanisms of living with dementia.
Dementia diagnosis in lesser developed countries like those on the African continent, where research is scarce and stigmatisation can put lives in danger (Kalula and Petros, 2011), is in itself problematic. Bunn et al. (2010) allude to the transferability of research findings that are mostly geographically limited, implying that the disclosure of a diagnosis might be even more complex in non-western cultures.
Not disclosing a diagnosis raises ethical concerns (Rai, 2009) that seem to be missing in much of the research.
Caring for a vulnerable person should be a noble calling, inspired by love and affection for the individual and sustained by the support of a caring community. The reality of life as a Carer for most people in South Africa cannot be further removed from this ideal.
A critical consideration of the potential of design and technology for the ca...GERATEC
Florence Nightingale gives some of the first words of advice on design in her “Notes on Nursing” - “But the fewer passages there are in a hospital the better”, referring to the fact that hospital design can impact the need for fresh air, that in her opinion is essential to the healing process (Nightingale, F. 1860). In 1943 Maslow developed his hierarchy of needs, starting with the physical need to be safe and secure, above which is the need to be loved, connected and belong, followed by the higher needs of understanding, knowing and self-actualization. The relationship between the physical buildings/environment and the impact on quality of life of the people living with dementia is the focus of this assignment.
The World Health Organization Quality of Life Assessment Group (1998) includes the physical environment as one of the dimensions of the quality of life. The quality of life of people living with dementia has been in the spotlight over the past years, and Ready and Ott (2003) did a review of the measurement tools, pointing out the differences and complexities of trying to determine exactly what constitutes quality of life for people living with dementia. The transactional interaction between people living with dementia, their care partners (both formal and informal), the new role of technology and the design of buildings and cities are explored in terms of the role it plays in constructing a new discourse for improvements in the quality of life of people living with dementia.
A critical comparison of the strengths and limitations of the pyschological a...GERATEC
The phrase “Understanding Dementia” is perhaps the ultimate oxymoron. For how can we even begin to “understand” something of which we know neither the cause nor the cure? In his introduction to Al Power’s book “Dementia beyond drugs” (Power, 2011), Bill Thomas, founder of The Eden Alternative says: “Conventional wisdom, if you can call it that, holds that dementia represents a peculiar, deadly, and completely irredeemable kind of decline.” (p.ix). A phenomenon that has been around as long as human beings themselves have been around, dementia presents an existential crisis to humanity in that it threatens everything that most people aim for – superficial or not – in living what Socrates described as a long, good life. In Jewish tradition it is customary to wish someone a long life when a relative passes away. Is this a good, happy wish or is it a curse when someone is diagnosed with Dementia every four seconds in the world? (World Health Organization, 2012)
The Psychological and the Gerontological approaches constitute an expansion on the purely biomedical perspective of the disease, exploring the impact that dementia has on the individual living with it, as well as the impact that it has on the broader community. It is argued in this assignment that while Psychology and Gerontology have expanded on the narrow viewpoints of the biomedical approach, the heterogeneous nature of the manifestations of dementia, especially in the Developing World where research is not on the political agenda, leaves the world none the wiser in how to deal with this epidemic.
A critical discussion of the focus on the biomedical perspective in the preve...GERATEC
The biomedical focus on dementia brought the phenomena of what was considered a normal part of ageing into the medical and scientific field of interest (Bartlett, R and O’Connor, D. 2010). This perspective comes with a strong focus on neurodegenerative decline and deficits. Even though Alzheimer’s disease was around for more than 70 years since noted by Alois Alzheimer, it was only in the 1980’s that the “disease emerged as an illness category and policy issue” (Lyman, A. 1989). The Nun Study of David A. Snowdon, PhD, which started in 1991, brought a new perspective to the research into dementia. It was discovered during autopsies that people who have lived their lives without any signs of dementia, actually had amyloid plaques and tangles in their brains congruent to people living with dementia (Snowdon, D.A. 2003). Biomedical research is at this stage the primary focus of research into dementia, receiving most of the funding budget. According to an article in Therapy Today (July 2012) in the UK alone, £66 million will be allocated to dementia research by 2015, of which only £13 million is earmarked for social science research. In the WHO report on Dementia, Daviglus M.L. et al of the US National Institutes of Health state that “firm conclusions cannot be drawn about the association of any modifiable risk factor with cognitive decline of Alzheimer disease”.
The importance of the research findings of the biomedical model cannot be underestimated. However, considering the facts that t this point there seems to be nothing that can prevent nor cure Dementia, I am of the opinion that more research and funding should focused on creating a life worth living for people who live with dementia.
A critical assessment of the research literature that explores the disclosure...GERATEC
Being diagnosed with dementia can impact on an individual’s emotional, vocational, spiritual, physical, social, intellectual and personal dimensions of wellness (Montague, 2013). The stigmatisation that comes with the diagnosis can be as devastating as the disease itself. For this reason alone, seeking a diagnosis when suspecting that there could be something wrong with one’s cognitive functioning, is not a simple or easy decision.
Christine Bryden, in her book “Dancing with Dementia” (2005), makes the statement “It took me three years before I could speak openly about my diagnosis, overcoming the hopelessness and depression that exacerbated my dementia and took me on a downward spiral of dysfunction” (Bryden, 2005, p39).
The psychological impact of a diagnosis (Lee et al., 2014) is severe, taking some individuals up to six months to adjust and cope with the feelings of loss before they can start to create new coping strategies and mechanisms of living with dementia.
Dementia diagnosis in lesser developed countries like those on the African continent, where research is scarce and stigmatisation can put lives in danger (Kalula and Petros, 2011), is in itself problematic. Bunn et al. (2010) allude to the transferability of research findings that are mostly geographically limited, implying that the disclosure of a diagnosis might be even more complex in non-western cultures.
Not disclosing a diagnosis raises ethical concerns (Rai, 2009) that seem to be missing in much of the research.
Caring for a vulnerable person should be a noble calling, inspired by love and affection for the individual and sustained by the support of a caring community. The reality of life as a Carer for most people in South Africa cannot be further removed from this ideal.
A critical consideration of the potential of design and technology for the ca...GERATEC
Florence Nightingale gives some of the first words of advice on design in her “Notes on Nursing” - “But the fewer passages there are in a hospital the better”, referring to the fact that hospital design can impact the need for fresh air, that in her opinion is essential to the healing process (Nightingale, F. 1860). In 1943 Maslow developed his hierarchy of needs, starting with the physical need to be safe and secure, above which is the need to be loved, connected and belong, followed by the higher needs of understanding, knowing and self-actualization. The relationship between the physical buildings/environment and the impact on quality of life of the people living with dementia is the focus of this assignment.
The World Health Organization Quality of Life Assessment Group (1998) includes the physical environment as one of the dimensions of the quality of life. The quality of life of people living with dementia has been in the spotlight over the past years, and Ready and Ott (2003) did a review of the measurement tools, pointing out the differences and complexities of trying to determine exactly what constitutes quality of life for people living with dementia. The transactional interaction between people living with dementia, their care partners (both formal and informal), the new role of technology and the design of buildings and cities are explored in terms of the role it plays in constructing a new discourse for improvements in the quality of life of people living with dementia.
A critical comparison of the strengths and limitations of the pyschological a...GERATEC
The phrase “Understanding Dementia” is perhaps the ultimate oxymoron. For how can we even begin to “understand” something of which we know neither the cause nor the cure? In his introduction to Al Power’s book “Dementia beyond drugs” (Power, 2011), Bill Thomas, founder of The Eden Alternative says: “Conventional wisdom, if you can call it that, holds that dementia represents a peculiar, deadly, and completely irredeemable kind of decline.” (p.ix). A phenomenon that has been around as long as human beings themselves have been around, dementia presents an existential crisis to humanity in that it threatens everything that most people aim for – superficial or not – in living what Socrates described as a long, good life. In Jewish tradition it is customary to wish someone a long life when a relative passes away. Is this a good, happy wish or is it a curse when someone is diagnosed with Dementia every four seconds in the world? (World Health Organization, 2012)
The Psychological and the Gerontological approaches constitute an expansion on the purely biomedical perspective of the disease, exploring the impact that dementia has on the individual living with it, as well as the impact that it has on the broader community. It is argued in this assignment that while Psychology and Gerontology have expanded on the narrow viewpoints of the biomedical approach, the heterogeneous nature of the manifestations of dementia, especially in the Developing World where research is not on the political agenda, leaves the world none the wiser in how to deal with this epidemic.
A critical discussion of the focus on the biomedical perspective in the preve...GERATEC
The biomedical focus on dementia brought the phenomena of what was considered a normal part of ageing into the medical and scientific field of interest (Bartlett, R and O’Connor, D. 2010). This perspective comes with a strong focus on neurodegenerative decline and deficits. Even though Alzheimer’s disease was around for more than 70 years since noted by Alois Alzheimer, it was only in the 1980’s that the “disease emerged as an illness category and policy issue” (Lyman, A. 1989). The Nun Study of David A. Snowdon, PhD, which started in 1991, brought a new perspective to the research into dementia. It was discovered during autopsies that people who have lived their lives without any signs of dementia, actually had amyloid plaques and tangles in their brains congruent to people living with dementia (Snowdon, D.A. 2003). Biomedical research is at this stage the primary focus of research into dementia, receiving most of the funding budget. According to an article in Therapy Today (July 2012) in the UK alone, £66 million will be allocated to dementia research by 2015, of which only £13 million is earmarked for social science research. In the WHO report on Dementia, Daviglus M.L. et al of the US National Institutes of Health state that “firm conclusions cannot be drawn about the association of any modifiable risk factor with cognitive decline of Alzheimer disease”.
The importance of the research findings of the biomedical model cannot be underestimated. However, considering the facts that t this point there seems to be nothing that can prevent nor cure Dementia, I am of the opinion that more research and funding should focused on creating a life worth living for people who live with dementia.
Drennan and Alred (Eds) Ch 1 'Secure Recovery' (2012)Andrew Voyce MA
Mention of the link between wellbeing and disistance from offending is mentioned here. Also Patricia Deegan. Factors affecting this socially excluded group, secure unit patients, are detailed. This chapter is written by the editors.
Providing Care
Following Sudden Death:
The Practice of Viewing
ABSTRACT
En règle générale, à la suite d’une mort subite, il faut décider s’il devrait y avoir une exposition en maison funéraire ou non. De nombreuses contradictions existent dans les lignes directrices de la pratique et il y a un manque manifeste de données
probantes à l’appui de l’exposition et de son incidence sur le processus du deuil dans son ensemble. En outre, il faut examiner les rôles et les attitudes des professionnels les plus immédiatement impliqués à la suite d’une mort subite, car, d’ordinaire, il n’y a pas d’exposition sans l’implication de professionnels. Les travailleurs sociaux sont souvent
les premiers professionnels appelés à répondre aux besoins de personnes vivant un deuil subit; ils peuvent jouer un rôle clé de représentation relativement aux besoins de ces personnes et les aider à composer avec leur peine. Cette étude qualitative s’est penchée sur les perspectives et l’expérience de personnes subitement endeuillées, concernant l’exposition en maison funéraire. Les résultats de cette étude sont regroupés sous trois
thèmes : les éléments particuliers afférents à l’exposition, les réactions psychiques des personnes touchées et les interactions professionnelles. On s’intéresse principalement ici aux interactions professionnelles.
I watched and I was ignored by everyone. I was ignored. The ambulance workers did their job. The police walked in and out. The fireman walked in and out. They looked at me. No one sat with me. No one acknowledged me, with the exception of one ambulance worker who came up to me and said, “We’re doing everything we can.” He was the only person that acknowledged me at all, and that pisses me off now (Louise1, bereaved spouse).
Severity in Scope versus altruism: working against organ donation's realizati...Michele Battle-Fisher
(Nov. 2011) Severity in Scope versus Altruism: Working Against Organ
Donation’s Realization of Goals- An Essay. [electronic version] OJHE Online Journal
of Health Ethics. 7(2). Retrieved from http://ojhe.org/.
HXR 2016: Sustainable Design -Jen Briselli, James Christie, Mad*PowHxRefactored
Discover the carbon impact of the internet (hint: it's bigger than that of entire countries and due to hit 9 billion tons of CO2 by 2020)
How to design, build, and host low-carbon websites
Learn behavior change techniques that can help consumers make greener choices online
Attitudes and beliefs: design for audiences with diverse world-views (including those who disagree about climate change)
Restoring balance through cultural safety & the medicine wheelgriehl
North American culture sees health as an individual problem, but we live in dynamic, intercultural communities. Health is multifaceted with issues related to mental, spiritual, emotional, and physical health. Our culture can be a barrier to caring for our clients. Each area of the medicine wheel needs to be balanced for wholistic health for the client, where the client is the person, family, group, or community. Indigenous teachings support addressing all areas of the person to achieve balance. Cultural safety stresses the importance of reflection and acceptance of differences. We should not treat everyone the same, but we do need to recognize and acknowledge our blind spots.
2015 MFLNMC VLE Session #1: Relating! Caring and Culturemilfamln
Centered around a theme of reenergizing and rejuvenating the work environment, this FREE web-based learning opportunity is open to the public and will be similar to a professional conference – no travel involved! Part 2 of the Virtual Learning Event Session will focus on professional development in the area of ‘Cultural Competencies.’
Cultural competence and linguistic competence are widely recognized as fundamental aspects of quality in health/behavioral health care and in the provision of social services and supports. Cultural and linguistic competence are viewed as essential approaches for reducing disparities and for promoting equity by improving access, utilization, service delivery, and health and well-being among patients, their families, and communities. While the evidence suggests the efficacy of these approaches, many in health/behavioral health care and social service organizations continue to struggle with the full integration of cultural and linguistic competence into their policies, structures, practices, and procedures. This VLE session will explore the conceptual frameworks of cultural and linguistic competence and examine their relevance for supporting service members and their families.
Drennan and Alred (Eds) Ch 1 'Secure Recovery' (2012)Andrew Voyce MA
Mention of the link between wellbeing and disistance from offending is mentioned here. Also Patricia Deegan. Factors affecting this socially excluded group, secure unit patients, are detailed. This chapter is written by the editors.
Providing Care
Following Sudden Death:
The Practice of Viewing
ABSTRACT
En règle générale, à la suite d’une mort subite, il faut décider s’il devrait y avoir une exposition en maison funéraire ou non. De nombreuses contradictions existent dans les lignes directrices de la pratique et il y a un manque manifeste de données
probantes à l’appui de l’exposition et de son incidence sur le processus du deuil dans son ensemble. En outre, il faut examiner les rôles et les attitudes des professionnels les plus immédiatement impliqués à la suite d’une mort subite, car, d’ordinaire, il n’y a pas d’exposition sans l’implication de professionnels. Les travailleurs sociaux sont souvent
les premiers professionnels appelés à répondre aux besoins de personnes vivant un deuil subit; ils peuvent jouer un rôle clé de représentation relativement aux besoins de ces personnes et les aider à composer avec leur peine. Cette étude qualitative s’est penchée sur les perspectives et l’expérience de personnes subitement endeuillées, concernant l’exposition en maison funéraire. Les résultats de cette étude sont regroupés sous trois
thèmes : les éléments particuliers afférents à l’exposition, les réactions psychiques des personnes touchées et les interactions professionnelles. On s’intéresse principalement ici aux interactions professionnelles.
I watched and I was ignored by everyone. I was ignored. The ambulance workers did their job. The police walked in and out. The fireman walked in and out. They looked at me. No one sat with me. No one acknowledged me, with the exception of one ambulance worker who came up to me and said, “We’re doing everything we can.” He was the only person that acknowledged me at all, and that pisses me off now (Louise1, bereaved spouse).
Severity in Scope versus altruism: working against organ donation's realizati...Michele Battle-Fisher
(Nov. 2011) Severity in Scope versus Altruism: Working Against Organ
Donation’s Realization of Goals- An Essay. [electronic version] OJHE Online Journal
of Health Ethics. 7(2). Retrieved from http://ojhe.org/.
HXR 2016: Sustainable Design -Jen Briselli, James Christie, Mad*PowHxRefactored
Discover the carbon impact of the internet (hint: it's bigger than that of entire countries and due to hit 9 billion tons of CO2 by 2020)
How to design, build, and host low-carbon websites
Learn behavior change techniques that can help consumers make greener choices online
Attitudes and beliefs: design for audiences with diverse world-views (including those who disagree about climate change)
Restoring balance through cultural safety & the medicine wheelgriehl
North American culture sees health as an individual problem, but we live in dynamic, intercultural communities. Health is multifaceted with issues related to mental, spiritual, emotional, and physical health. Our culture can be a barrier to caring for our clients. Each area of the medicine wheel needs to be balanced for wholistic health for the client, where the client is the person, family, group, or community. Indigenous teachings support addressing all areas of the person to achieve balance. Cultural safety stresses the importance of reflection and acceptance of differences. We should not treat everyone the same, but we do need to recognize and acknowledge our blind spots.
2015 MFLNMC VLE Session #1: Relating! Caring and Culturemilfamln
Centered around a theme of reenergizing and rejuvenating the work environment, this FREE web-based learning opportunity is open to the public and will be similar to a professional conference – no travel involved! Part 2 of the Virtual Learning Event Session will focus on professional development in the area of ‘Cultural Competencies.’
Cultural competence and linguistic competence are widely recognized as fundamental aspects of quality in health/behavioral health care and in the provision of social services and supports. Cultural and linguistic competence are viewed as essential approaches for reducing disparities and for promoting equity by improving access, utilization, service delivery, and health and well-being among patients, their families, and communities. While the evidence suggests the efficacy of these approaches, many in health/behavioral health care and social service organizations continue to struggle with the full integration of cultural and linguistic competence into their policies, structures, practices, and procedures. This VLE session will explore the conceptual frameworks of cultural and linguistic competence and examine their relevance for supporting service members and their families.
How many patients does case series should have In comparison to case reports.pdfpubrica101
Pubrica’s team of researchers and writers create scientific and medical research articles, which may be important resources for authors and practitioners. Pubrica medical writers assist you in creating and revising the introduction by alerting the reader to gaps in the chosen study subject. Our professionals understand the order in which the hypothesis topic is followed by the broad subject, the issue, and the backdrop.
https://pubrica.com/academy/case-study-or-series/how-many-patients-does-case-series-should-have-in-comparison-to-case-reports/
Navigating Challenges: Mental Health, Legislation, and the Prison System in B...Guillermo Rivera
This conference will delve into the intricate intersections between mental health, legal frameworks, and the prison system in Bolivia. It aims to provide a comprehensive overview of the current challenges faced by mental health professionals working within the legislative and correctional landscapes. Topics of discussion will include the prevalence and impact of mental health issues among the incarcerated population, the effectiveness of existing mental health policies and legislation, and potential reforms to enhance the mental health support system within prisons.
India Clinical Trials Market: Industry Size and Growth Trends [2030] Analyzed...Kumar Satyam
According to TechSci Research report, "India Clinical Trials Market- By Region, Competition, Forecast & Opportunities, 2030F," the India Clinical Trials Market was valued at USD 2.05 billion in 2024 and is projected to grow at a compound annual growth rate (CAGR) of 8.64% through 2030. The market is driven by a variety of factors, making India an attractive destination for pharmaceutical companies and researchers. India's vast and diverse patient population, cost-effective operational environment, and a large pool of skilled medical professionals contribute significantly to the market's growth. Additionally, increasing government support in streamlining regulations and the growing prevalence of lifestyle diseases further propel the clinical trials market.
Growing Prevalence of Lifestyle Diseases
The rising incidence of lifestyle diseases such as diabetes, cardiovascular diseases, and cancer is a major trend driving the clinical trials market in India. These conditions necessitate the development and testing of new treatment methods, creating a robust demand for clinical trials. The increasing burden of these diseases highlights the need for innovative therapies and underscores the importance of India as a key player in global clinical research.
The dimensions of healthcare quality refer to various attributes or aspects that define the standard of healthcare services. These dimensions are used to evaluate, measure, and improve the quality of care provided to patients. A comprehensive understanding of these dimensions ensures that healthcare systems can address various aspects of patient care effectively and holistically. Dimensions of Healthcare Quality and Performance of care include the following; Appropriateness, Availability, Competence, Continuity, Effectiveness, Efficiency, Efficacy, Prevention, Respect and Care, Safety as well as Timeliness.
CHAPTER 1 SEMESTER V PREVENTIVE-PEDIATRICS.pdfSachin Sharma
This content provides an overview of preventive pediatrics. It defines preventive pediatrics as preventing disease and promoting children's physical, mental, and social well-being to achieve positive health. It discusses antenatal, postnatal, and social preventive pediatrics. It also covers various child health programs like immunization, breastfeeding, ICDS, and the roles of organizations like WHO, UNICEF, and nurses in preventive pediatrics.
CHAPTER 1 SEMESTER V - ROLE OF PEADIATRIC NURSE.pdfSachin Sharma
Pediatric nurses play a vital role in the health and well-being of children. Their responsibilities are wide-ranging, and their objectives can be categorized into several key areas:
1. Direct Patient Care:
Objective: Provide comprehensive and compassionate care to infants, children, and adolescents in various healthcare settings (hospitals, clinics, etc.).
This includes tasks like:
Monitoring vital signs and physical condition.
Administering medications and treatments.
Performing procedures as directed by doctors.
Assisting with daily living activities (bathing, feeding).
Providing emotional support and pain management.
2. Health Promotion and Education:
Objective: Promote healthy behaviors and educate children, families, and communities about preventive healthcare.
This includes tasks like:
Administering vaccinations.
Providing education on nutrition, hygiene, and development.
Offering breastfeeding and childbirth support.
Counseling families on safety and injury prevention.
3. Collaboration and Advocacy:
Objective: Collaborate effectively with doctors, social workers, therapists, and other healthcare professionals to ensure coordinated care for children.
Objective: Advocate for the rights and best interests of their patients, especially when children cannot speak for themselves.
This includes tasks like:
Communicating effectively with healthcare teams.
Identifying and addressing potential risks to child welfare.
Educating families about their child's condition and treatment options.
4. Professional Development and Research:
Objective: Stay up-to-date on the latest advancements in pediatric healthcare through continuing education and research.
Objective: Contribute to improving the quality of care for children by participating in research initiatives.
This includes tasks like:
Attending workshops and conferences on pediatric nursing.
Participating in clinical trials related to child health.
Implementing evidence-based practices into their daily routines.
By fulfilling these objectives, pediatric nurses play a crucial role in ensuring the optimal health and well-being of children throughout all stages of their development.
Struggling with intense fears that disrupt your life? At Renew Life Hypnosis, we offer specialized hypnosis to overcome fear. Phobias are exaggerated fears, often stemming from past traumas or learned behaviors. Hypnotherapy addresses these deep-seated fears by accessing the subconscious mind, helping you change your reactions to phobic triggers. Our expert therapists guide you into a state of deep relaxation, allowing you to transform your responses and reduce anxiety. Experience increased confidence and freedom from phobias with our personalized approach. Ready to live a fear-free life? Visit us at Renew Life Hypnosis..
Defecation
Normal defecation begins with movement in the left colon, moving stool toward the anus. When stool reaches the rectum, the distention causes relaxation of the internal sphincter and an awareness of the need to defecate. At the time of defecation, the external sphincter relaxes, and abdominal muscles contract, increasing intrarectal pressure and forcing the stool out
The Valsalva maneuver exerts pressure to expel faeces through a voluntary contraction of the abdominal muscles while maintaining forced expiration against a closed airway. Patients with cardiovascular disease, glaucoma, increased intracranial pressure, or a new surgical wound are at greater risk for cardiac dysrhythmias and elevated blood pressure with the Valsalva maneuver and need to avoid straining to pass the stool.
Normal defecation is painless, resulting in passage of soft, formed stool
CONSTIPATION
Constipation is a symptom, not a disease. Improper diet, reduced fluid intake, lack of exercise, and certain medications can cause constipation. For example, patients receiving opiates for pain after surgery often require a stool softener or laxative to prevent constipation. The signs of constipation include infrequent bowel movements (less than every 3 days), difficulty passing stools, excessive straining, inability to defecate at will, and hard feaces
IMPACTION
Fecal impaction results from unrelieved constipation. It is a collection of hardened feces wedged in the rectum that a person cannot expel. In cases of severe impaction the mass extends up into the sigmoid colon.
DIARRHEA
Diarrhea is an increase in the number of stools and the passage of liquid, unformed feces. It is associated with disorders affecting digestion, absorption, and secretion in the GI tract. Intestinal contents pass through the small and large intestine too quickly to allow for the usual absorption of fluid and nutrients. Irritation within the colon results in increased mucus secretion. As a result, feces become watery, and the patient is unable to control the urge to defecate. Normally an anal bag is safe and effective in long-term treatment of patients with fecal incontinence at home, in hospice, or in the hospital. Fecal incontinence is expensive and a potentially dangerous condition in terms of contamination and risk of skin ulceration
HEMORRHOIDS
Hemorrhoids are dilated, engorged veins in the lining of the rectum. They are either external or internal.
FLATULENCE
As gas accumulates in the lumen of the intestines, the bowel wall stretches and distends (flatulence). It is a common cause of abdominal fullness, pain, and cramping. Normally intestinal gas escapes through the mouth (belching) or the anus (passing of flatus)
FECAL INCONTINENCE
Fecal incontinence is the inability to control passage of feces and gas from the anus. Incontinence harms a patient’s body image
PREPARATION AND GIVING OF LAXATIVESACCORDING TO POTTER AND PERRY,
An enema is the instillation of a solution into the rectum and sig
Caring for a family member with dementia is fraught with burden and stress: A discussion of this statement
1. 1
CARING FOR A FAMILY MEMBER WITH DEMENTIA IS FRAUGHT WITH BURDEN AND STRESS – A DISCUSSION OF THIS STATEMENT
“Adopting a sole identity as our care-giver highlights our illness and strips both of us of other identities, we have become care-giver and sufferer, in a relationship of co-dependence… In this role, you may feel soon overwhelmed by the multitude of tasks, of remembering for two, of planning and organizing for two, of covering up our deficits, and grieving over our losses, rather than looking for what remains. You can quickly become exhausted, sad, depressed and in despair…” (Bryden, 2005, p149).
Abstract:
The title “Caregiving for a family member with dementia is fraught with burden and stress” elicits more questions than answers. Who is this caregiver – husband or wife, son or daughter, second husband or wife, stepson or –daughter, daughter- or son-in-law, grandchild – a list with endless variations. Would the experience be different when caring for a mother to that of caring for a father, husband or wife, brother, uncle, aunt, cousin, and nephew? Can the term “caregiver” be considered a singular entity with a singular emotional experience? What is the role of - amongst others - culture, ethnicity, gender, sexual orientation, language, religion, age, personality, social environment and education? What role does the type of dementia of the care recipient play? Do all people deal with burden and stress in the same way, and if not, why not? What constitutes burden and stress, and how are these defined within the heterogeneous environment of caregiving?
It is often said, “If you have met one person with dementia, you have met one person with dementia”. The same might very well apply to the family caregiver. Nolan et al (2002) refer to Dilworth-Anderson and Montgomery & Williams (2001) when saying that “In essence the message is clear – caregiving can only be fully appreciated and adequately supported in its appropriate context” (p81).
2. 2
Is it all about burden and stress?:
Hoyer and Rodin are quoted by Coetsee (2007) in a definition on what would constitute “burden of care”, referring to an objective and subjective burden. The former would relate to the physical circumstances that impact on the life of the caregiver, for example having to leave their work, not being able to socialise and having to transform their physical living space. The latter would describe the impact on the emotional wellbeing of the caregiver, their attitude to the role and emotional responses to the transition to caregiver. The burden of care would impact on the “physical, psychological and social” (Coetsee, 2007, p46) realities of becoming an informal caregiver.
It is interesting to note that a lot of research focus is on burden and stress, which in itself would question the stigmatisation of dementia care, putting a very negative focus on the caregiving relationship. Nolan et al (2002) sight a number of articles where the focus is purely on the negatives of the caregiver experience, and asks the question if this should in fact be the focus, and not a more positive approach that would enhance and support the efforts of caregivers. Ribiero and Paúl (2008) put forward a strong case for the positive outcomes of familial, informal caregiving. Interesting to note that the aim of this study was to find positive outcomes in the caregiving relationships, in contrast with many studies only focusing on the burden and stressors.
Of great relevance in this study, as well as noted in Nolan et al (2003), Carpenter and Mak (2007) is the impact that a healthy, loving premorbid relationship has on the new caregiving relationship. Where couples had affection and a healthy, loving relationship prior to the onset of the disease, this would continue into the caregiving relationship, with less chance of abuse and a longer stay at home or in the community.
Ribiero and Paúl (2008) conclude, “The rich and rewarding returns call for better understanding without the skewed presumption and perception that the care- giving experience is wholly negative” (p180).
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Quoting Twigg and Atkin (1994), Nolan et al (2002) warn against the ‘pathologising’ of care. The article also points out the fact that the perception of burden and stress could possibly be more in the opinion of the researchers than in that of the people actually delivering the care, and suggest a different approach in research.
Why would someone decide to become a caregiver?
Camden et al (2011), Ribeiro and Paúl (2008), Nolan et al (2003) all point to the different reasons why people would take on the role of caregiver. In my practice experience I have seldom come across an individual who have make a conscious decision to become a family caregiver. Most people do not choose this role, very few are trained for it, and many take a long time before they realize that they are actually in a caregiver role (Carpenter and Mak, 2007). For spouses it is often the natural thing to do, a natural progression in the trajectory of a life together. Having lived with a Grandfather with Alzheimer’s disease for many years, everyone in our family became a caregiver, without ever labeling ourselves as such, or even thinking of it as a role. We did what we had to do – take care of someone whom we deeply care for.
As noted in the articles cited, people might take on the role because of cultural expectations, as is certainly the case in many African cultures where daughters are expected to take care of their ageing parents. In my work practice (I employ 500 staff members), it is not uncommon for female staff members to resign from their work in order to go to the family home to care for an ageing parent. There is no formal support for informal caregivers in South Africa at all, which makes this decision a very brave one. It is also noted that religion might motivate people to care, as well as a feeling of reciprocity. Camden et al (2011) makes a strong case for the fact “that motivations for caring influence the well-being of the care recipient, and possibly also the carer” (p1448).
Camden et al (2011) point out that where caregivers take on the role as a result of external factors like peer pressure or a feeling of guilt or duty, the outcomes might not always be very positive. These relationships might be abusive and
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instutitionalisation happen a lot faster.
The complexities of the caregiver role:
The heterogeneous nature of relationships in general does not make the transition into a caregiving relationship easier. Carpenter and Mak (2007) point out that “Naturally, each type of couple has its own unique features, just as any individual couple has its own idiosyncrasies. Yet for all these variations, caregiving presents a common set of challenges and opportunities” ??. I would differ from this point of view, in that the reliance on the family-systems approach might work within heterosexual, Western cultures, but would be greatly challenged within other societies and social groups.
As a “gay” man, I see the complexities of care partnerships in my circle of friends and family. There is often the expectation that the child “who is not married” should (and could) take on the caregiving role for ageing parents. As this so- called “not married” individual often has no children, it is automatically assumed that he/she would have more time and fewer responsibilities and should take on the role of caregiver. In same sex couples who have not made their union public, the assumptions of family members in terms of their right to intervene can lead to major trauma and stress for a loving caregiving partner. (Whitman DATE?) Same sex couples are often not recognised as couples, with the result that families might not consider a life partner taking on the role of caregiver (Newman, 2005 and Price, 2012). In spite of the very progressive Constitution of South Africa that allows civil partnerships and adoption for same sex couples, stigmatisation and discrimination are still very real issues especially in rural parts of the country.
What about the person living with dementia who is on the receiving end of care?
Very few studies have taken into consideration the views of people living with dementia that are on the receiving end of caregiving relationship. The dyadic (and often triadic) nature of this complex interaction could easily leave the most important role player out of the equation. Aggarwal et al (2003) conducted a study that took the perspective of people living with dementia into account,
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concluding that people living with dementia do retain a sense of self, including a sense of values, in spite of their disability. Whilst most of the focus this far has been on the burden and stress of the caregiver, it is my opinion that much more attention should be paid to the person living with dementia. In my practice I deal with many families. It is often noticeable how families put their needs, desires, fears and anxieties before that of the person for whom they propose to care, often with disastrous results. It seems to be very hard for families and informal caregivers to stand back, to practice non-judgmental self-observation and analyse their own motivation for caring. This often results in family strive, with the person living with dementia being on the receiving end of abuse from so- called well-meaning relatives. I have often dealt with family caregivers who care for very selfish reasons of wanting to be seen to be the “good” person in the family, resulting in huge resentment towards the person living with dementia. As pointed out before, the reasons for entering into a caregiving role will dictate the trajectory of care.
A South African perspective on informal caregiving:
Joubert, in her study A Profile of Informal Carers in South Africa (2005) says “…in 2000, 26.9% of the population were Caregivers according to the definition used. This implies that an estimated 7.4 million persons in the South African population 18 years and older had informal caregiving responsibilities in the year 2000” (p89).
The 2011 census figures released by Statistics South Africa reveal that:
1. In the 2001 population census, there were 3,28 million people in the country older than 60.
2. In the 2011 statistics, the number of people over the age of 60 increased to 4 151 760.
“Population ageing, or demographic ageing, refers, in simplistic terms, to the process by which the older population (60 years and older) become a proportionately larger component of the total population.” (Joubert and Bradshaw, 2006, p204) According to this report, more than one person in ten
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will be over the age of 60 in 2025 in South Africa. Considering the burden of diseases of lifestyle, the insistence of the Government on de-institutionalisation and a total lack of community health services as described in the above report, care responsibilities fall squarely in the lap of families and neighbours of vulnerable people in South Africa.
Joubert further states that “The impact of demographic and epidemiological change in South Africa, through the simultaneous effects of population ageing and an intensified, quadruple burden of disease, have brought about changes in the health profile of the population. In turn, these changes have affected an increased need for care in the country. In the presence of this increased demand for care, evidence exists that formal public health care services fall short of providing adequate and satisfactory care to those who need care, while, at the same time, spiraling private health care costs place private health services beyond the financial reach of the majority of the population” (p102).
South Africa has eleven official languages, of which only English and Afrikaans have an actual word for the term dementia. The different ethnic groupings have strong traditional values and beliefs, especially in terms of their Elders. With migration, the HIV/AIDS pandemic, poverty, the Apartheid legacy of non- education, migrant mineworkers and the impact of diseases of lifestyle on the quality of life of the majority of people in the country, the reality of informal caregivers tells a different story to that of the rest of the world.
Vally (2011) points out that the HIV/AIDS pandemic will give rise to a high incidence of HIV/AIDS related dementia, as most HIV positive people in South Africa will not have access to anti-retrovirals. The result is that those individuals, who die of AIDS, will leave behind parents and children who are often cast into caregiving relationships for which they are hardly equipped. As per the study by Ivey et al (2012) it is interesting to note that Filipino caregivers will often emphasise the positive aspects of caregiving. I have found in my work with African caregivers that they consider their role to be very important in their community, and that they also have a certain status for taking care of their Elders.
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Joubert (2005) quotes statistics of a report by Age-in-Action that was conducted in South Africa in 1999, where 600 informal caregivers were interviewed. “The study found, inter alia, that 86% of the participants were female; over one-fifth were 60 years and older; over 60% spent on average more than 10 house per day in caregiving activities; 28% were caring for more than 10 years at the time of the study; and about one-quarter were not able to take any break or time of from his/her carer responsibilities” (p47-48).
The reality of the life of a caregiver in rural South Africa is harsh considering the following statistics: 21% of households has no running water, 49% has no flush toilet, 14% has not toilet at all, 27% live in informal housing structures, 43% has no school education, 50% has no electricity and 67% of the population are “African”, amongst others Sesotho, Tswana, Venda, Pedi, Xhosa, Zulu, Ndebele, Pondo and KhoIsan. (Statistics South Africa 2011).
In an article Care for Elderly People with Mental Illness: A Global Problem, David Skuse (Behavioural and Brain Sciences Unit, Institute of Child Health, London UK) says:
“We often assume that cultural factors in lower-income areas lead to greater respect for, and better care of, the elderly than we experience in many parts of the Western hemisphere. This appears to be a misapprehension, and attitudes towards the elderly are changing as the impact of industrialization increases” (p29).
Filial piety was believed to be one of the positive attributes of the African culture, which has now been eroded by industrialisation and urbanisation, leaving many Elders destitute in rural parts of South Africa. The total lack of infrastructure in primary healthcare, combined with poverty and a lack of education, makes the plight of caregivers and people living with dementia extremely desperate. With no chance of ever entering formal long-term care, Elders are cared for in communities until they die. In my practice I have come across wonderful stories of care, as well as devastating practices of abuse.
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Conclusion:
Dartingdon (2007) gives an empathetic description of his role as a caregiver. It is clear that his skills allow him to write about his experience, giving him distance, separating him from what the world would see as the burden and stress of the caregiving relationship. These coping skills come with education and emotional intelligence, something that a social model of intervention could not provide in the short term. The sense of purpose that is so eloquently described in the study by Ribeiro and Paúl (2008) points to the fact that burden and stress of caregiving are perhaps also in the eye of the beholder. It can be heaven or it can be hell, depending on an uncountable number of variables.
RAYNE STROEBEL
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BIBLIOGRAPHY:
Bryden, C. (2005), Dancing with Dementia, Jessica Kingsley Publishers.
Nolan, M., Lundh, U., Grant, G. & Keady, J. (2003), Partnerships in Family Care: understanding the caregiving career, Open University Press.
Joubert, J. D. (2005), “A Profile of Informal Carers in South Africa”, (submitted in partial fulfillment of the requirements for the degree Magister Artium (Demography) in the Faculty of Humanities, University of Pretoria.
Blood, I. (2010), “Older people with high support needs: how can we empower them to enjoy a better life”, Joseph Rowntree Foundation.
Camden, A., Livingston, G. & Cooper, C. (2011), “Reasons why family members become carers and the outcome for the person with dementia: results from the CARD study”, International Psychogeriatrics, 23:9, 1442-1450.
Ribeiro, O. & Paúl, C. (2008), “Older male carers and the positive aspects of care”, Ageing & Society 28, 165-183.
Carpenter, B. D. & Mak, W. (2007), “Caregiving Couples”, Couples in Later Life, Generations, American Society on Aging.
Lin, M., Macmillan, M. & Brown, N. (2011), “A grounded theory longitudinal study of carers’ experiences of caring for people with dementia”, Dementia 2012 11: 181.
Ivey, S. L., Laditka, S. B., Price A. E., Tseng, W., Beard, R. L., Liu, R., Fetterman, D., Wu, B., & Logsdon, R. G. (2012), “Experiences and concerns of family caregivers providing support to people with dementia: A cross-cultural perspective”, Dementia 2013 12: 806.
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Kraijo, H., Brouwer, W., de Leeuw, R., Schrijvers, G. & van Exel, J., (2011), “Coping with caring: Profiles of caregiving by informal carers living with a loved one who has dementia”, Dementia 2012 11: 113.
Russell, R., (2008), “Their Story, My Story: Health of Older Men as Caregivers”, Generations, American Society of Aging.
Aggarwal, N., Vass, A. A., Minardi, H. A., Ward, R., Garfield, C. & Cybyk, B. (2003), “People with dementia and their relatives: personal experiences of Alzheimer’s and of the provision of care”, Journal of Psychiatric and Mental Health Nursing 10, 187-197.
Nielsen, T. R., Vogel, A., Riepe, M. W., de Mendonca, A., Rodrigues, G., Nobili, F., Gade, A., Waldemar, G. (2011), “Assessment of dementia in ethnic minority patients in Europe: a European Alzheimer’s Disease Consortium survey”, International Psychogeriatrics 23:1, 86-95.
Newman, R. (2005), “Partners in care: Being equally different: lesbian and gay carers”, Psychiatric Bulletin 29: 266-267.
Price, E. (2012), “Gay and lesbian carers: ageing in the shadow of dementia”, Ageing & Society 32, 516-532.
Cartington, T. (2007), “Two Days in December”, Dementia 6: 327.
Joubert, J., Bradshaw, D. (2006), “Population Ageing and Health Challenges in South Africa” in Chronic Diseases of Lifestyle in South Africa since 1995 – 2005, pp 204 – 218.
Nolan, M., Ingram, P. & Watson, R. (2002), “Working with Family Carers of People with Dementia: ‘Negotiated’ coping as an essential outcome”, Dementia 2002 1: 75.
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Vally, Z. (2011), “HIV-associated neurocognitive disorders”, The South African Journal of Psychiatry Vol 17, No 4.
Whitman, L. (ed) (2009), Telling Tales About Dementia: experiences of caring, Jessica Kingsley Publishers
Skuse, D. (2010), “Care for Elderly People with Mental Illness: A Global Problem”
International Psychiatry Volume 7.