Dementia and its Effects on Quality of Life

Dear Writer,
Information has been gathered to assist you in writing your paper on dementia and its effects on quality of life. Below you will find a brief overview of the disease, a definition of quality of life and how quality of life (QOL) is seen differently by patients and their caregivers.


What is Dementia?

In Cummings article, he states that Dementia is an organic brain syndrome that describes a variety of organic brain disorders. Dementia is a decline in mental abilities and the deterioration of mental functioning in its cognitive and emotional aspects such as: memory disorder, personality changes, and impaired reasoning. However, Finkel states that Dementia has other noticing factors that have been neglected until recently. In the past, doctors would call it ‘behavioural disturbances’ which was found to be too general and is replaced with ‘behavioural and psychological signs and symptoms’.

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VIDEO: https://www.youtube.com/watch?v=uLjQmqTkIk4

"Considerations for Dementia – What is Dementia?" video by the Atlantic Health Promotion Research Centre (AHPRC) states that Dementia is a progressive and ultimately terminal disease. The cause of Dementia is still unclear but is believed to be associated with family history, lifestyle and environment. The video highlights the key components of the disease and states that by year 2038, 1.1 million (3%) of the Canadian population will suffer from Dementia.


Signs & Symptoms

Kevin Duff recognizes individuals who suffer from Dementia will have a noticeable decline in communication, memory, and problem solving skills. These changes vary depending on the individual as it may occur quickly or very slowly over time. The most common signs and symptoms of dementia include:

• Memory loss
• Impaired judgment
• Difficultly with abstract reasoning
• Inappropriate behaviour
• Loss of communication skills
• Disorientation to time and place
• Neglect of personal care and safety
• Hallucinations and paranoia

The article ‘The early diagnosis of dementia’ written by De Lepeleire, Heyman and Buntinx touches upon how dementia is rising rapidly and needs attention as it affects both the patient and caregivers. There are five stages of dementia, which professionals use to evaluate the progression of symptoms in patients with dementia.
Stage 1:
No Impairment → represents no impairment in an individuals abilities. They show no signs of memory loss and are fully oriented in time and place.
Stage 2:
Questionable Impairment → signifies very slight impairment. The individual may have minor memory inconsistencies and may struggle to solve challenging problems. However, at this stage, they can still manage their own personal care and well-being without any help.
Stage 3:
Mild Impairment → embodies that the individual is showing noticeably impaired in each area, but the changes are still mild. Their short-term memory is deteriorating and may become disoriented.
Stage 4:
Moderate Impairment → symbolizes that the individual is moderately impaired in which their care and well-being needs to be accompanied. They are easily disoriented and struggle to understand time relationships. Their short-term memory is seriously impaired and it is difficult to remember anything that is new including people they just met.
Stage 5:
Severe Impairment → corresponds to the most severe stage of dementia. At this point, the individual cannot function at all without ones help. They experience extreme memory loss, which is impossible to engage in everyday activities even with assistance.


Definition of Quality of Life

Rebecca E. Ready recognizes the importance of defining, assessing, and improving the Quality of Life (QOL) for individuals with Dementia. While she mentions that this area of study is still in its early stages, she does explain that researchers thus far have been met with success. Ready explains that QOL is a challenging concept to define due to its subjective nature and numerous components, yet provides readers with a definition prepared by the World Health Organization:

Quality of Life: an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, standards, and concerns. 

Even with this definition, Ready explains that there is no consensus between authors although there are some areas of agreement. Some definitions focus solely on a patient’s participation in activities, their enjoyment of these activities and on affect. Others offer a more narrow conceptualization of QOL stating that the central components include mood, feelings of belonging, self-esteem, and the ability to experience satisfaction and enjoyment. Some authors include cognitive functioning and the ability to perform activities of daily living, while others include assessment of physical health, interpersonal relationships, and financial status. Overall however, Ready explains that nearly all definitions specific to dementia recognize that mood and affect are central and universal components to QOL. 

Dröes et al. also recognize the numerous definitions that exist for the concept of Quality of Life. They explain that in the 10 to 15 years leading up to when this article was written, quality of life became a key concept in the care for people who suffer chronic illnesses. Today, not only do we learn to cope with the illness, but we attempt to enhance the quality of life of people who suffer from the disease. Dröes et al. reveal in their study that there are several approaches to the concept of QOL in dementia. They explain that it is important to note the difference between the objective approach, central to the individual such as health, nutrition, and safety; and the subjective approach, central to the perceived well-being of the individual such as perceived health, satisfaction with financial situation, and the experience of pleasure. Dröes et al. are particularly interested however, in determining what people with mild to moderately severe dementia consider important for their quality of life and comparing these results with what caregivers consider important, in order to determine which domains are truly significant and which are simply based on views of others. 

Results indicate that most QOL domains mentioned as important by the individual with the illness were also acknowledged by the caregivers and in previous literature. These domains included affect, self-esteem/self-image, attachment, social contact, enjoyment of activities, physical and mental health, security and privacy, and self-determination and freedom. A few, however, were not mentioned or viewed as important to caregivers such as  a sense of aesthetics in living environment, financial situation, and being useful/giving meaning to life. This indicates that differences in perspectives exist between persons with dementia and their caregivers. It can be concluded then that in addition to the consistent domains, individuals with dementia are affected by their environment as well as their ability to help others. As well, Dröes et al. find in their research that caregivers tend to rate their patients lower in QOL than do the actual patients indicating that QOL is challenging to test for as it is entirely based on subjective assessment. 


Methods of Measuring Quality of Life

Measuring QOL is very challenging as it is a subjective concept and many feel that it can only be assessed through self-perceptions. A consequence to dementia is cognitive impairment therefore these individuals with dementia may not be able to understand questions about QOL or be able to give accurate answers to the questions. Their own accounts on their QOL may not be accurate to their experiences. Due to this difficulty of getting accurate answers many measures of QOL rely on getting information from caregivers or other observers. One example of an assessment of QOL is an interview with both the individual and their caregiver. The interviewer could than hear from both sources and incorporate the information into QOL ratings. Another approach could be to hold separate interviews with the patient and the caregivers. This would allow having two separate data sets to be compared for differences and similarities of perceptions.

Many quality of life reports gather information from self-ratings by people with dementia. Due to the loss of memory and impaired decision-making, self reports are not reliable or valid. Therefore there must be other measures for quality of life. One method, which is specific to quality of life of those with dementia, is the QUALIDEM. This instrument was developed in the Netherlands and is recommended to be used in the late stages of dementia. The QUALIDEM covers nine domains of QOL: care relationship, positive affect, negative affect, restless tense behaviour, social relationship, social isolation, positive self-image, feeling at home and having something to do. The later three domains listed cannot be assessed in people with severe dementia so instead the first six domains are assessed along with: enjoys meals, does not want to eat and likes to lie down in bed. There is also a scale called FAST, which classifies the severity of ones dementia. This instrument gives a scale between 1 and 7. A score of 1 means the individual is free of cognitive impairment, while a score of 7 is given to an individual with severe dementia. A score that is between 2 and 6 is for those that are in mild dementia to severe dementia. These instruments help establish ones quality of life and there severity of dementia.

Focus groups and interviews were conducted in order to gather information on what individuals with dementia and caregivers considered important for the quality of life of someone with dementia. These group discussions and individual interviews were conducted in nursing homes and meeting centers. Programme coordinators, nurse assistants and activity therapists also participated in the study. They interviewed a total of 106 people with dementia, 10 nurse assistants, and 3 occupational therapists. Furthermore 10 programme coordinators from 10 different meeting centers were asked to collect opinions on quality of life of people with dementia that participated in the day club, the coordinators also gave their own opinions. The question asked was: ‘Which aspects of daily life do you feel have an influence on your quality of life?’. The questions was restated many times and often reformulated to ensure the interviewees understood the question. The individual interviews with the elderly lasted about 10 minutes, and were recorded verbatim. The meeting center interviewees were asked to explain what can positively affect one's quality of life while those in the nursing home were asked what aspects have negative influences on quality of life. This was done so that a comparison could be made between answers. The group discussions in the meeting centers ranged from 30 to 60 minutes and the programme coordinators recorded the answers. 

Quality of life in dementia in perspective is also later discussed in the definition of quality of life section.

“ADI conducted an anonymous online survey in June 2012 of people with dementia and family or informal carers about their experiences of stigma. Over 2,500 individuals from 54 countries responded, including 2068 who responded in English and 519 who responded to versions in Spanish (282), Greek (94) and Chinese (143).”

The survey was conducted using a website called SurveyMonkey. It was a convenient way to attain participants, however the downfall of using the Internet to conduct the survey was that respondents were limited to being those with computers. Anyone who visited the ADI website had access to the survey, and the link was also emailed to many who then further distributed it. The survey collected information on people with dementia and their caregivers on their personal experiences with stigma related to the disease.


Stigma Against Dementia

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This report highlights consequences that come from being stigmatized because of a mental illness. Those stigmatized may not acknowledge symptoms and refuse to seek help, as they do not want to be diagnosed with a mental illness. The report aims to bring awareness of how individuals with dementia are stigmatized and wants to promote a society in which there is reduced stigma. Having a low understanding of the disease leads to misconceptions. This report has a lot of personal accounts on experiences with stigmatization from having dementia, many report feeling isolated and receiving negative reactions from neighbours. The report stresses that the initial step to reducing the stigma is to inform the public of the disorder, the more they know the less likely they are to misunderstand individuals with dementia. Dr. Jacob Roy Kuriakose, the chairman of Alzheimer’s Disease International (ADI) states that “Urgent action is required to improve the understanding of dementia and so reduce stigma“. A stigma always focuses on someone’s impairment rather than their strengths.

The symptoms of dementia resemble symptoms of a mental illness, so the stigmas regarding mental illness are transferred to those with dementia. In some cultures, there is a lot of pressure to keep the diagnosis ‘within the family’. Keeping the diagnosis a private matter is especially common in South Asia. This is a great source because it aims at reducing stigma, which in turn would increase one’s quality of life. With less stigma, individuals can get the help they really need without worrying about what others think. Less stigmatization would also raise their overall self-esteem.

The report gives ten key recommendations to overcome the stigma of dementia:

1.Educate the public
2.Reduce the isolation of people with dementia
3.Give people with dementia a voice
4.Recognize the rights of people with dementia and their carers
5.Involve people with dementia in their local communities
6.Support and educate informal and paid carers
7.Improve the quality of care at home and in care homes
8.Improve dementia training of primary healthcare physicians
9.Call on governments to create national Alzheimer/Dementia disease plans
10.Increase research into how to address stigma


Effects on Caregivers

Caffery and Molnar compiled a report on the prevalence of dementia in Ontario. The report addresses some challenges that Ontarians with Dementia face and discusses the effects on families and caregivers. As baby boomers grow older, the number of elders with dementia continues to grow. In Ontario, one out of ten people over the age of 65 are living with dementia; this is an increase of 16% in the past four years. The report also demonstrates the affects that Dementia has across the Ontario health care system. With the increase in cases there is a strain on health care resources and emergency rooms. Furthermore the report shows that because of a lack of public services for those with dementia, those with dementia often use up a lot of health care resources when some problems can be managed in other ways. Home care assessments showed that primary caregivers are often spouses or adult children who are unpaid for their care. People caring for someone with dementia provide 75% more care hours than other caregivers. The report emphasizes the burden that is brought onto caregivers and its impact on their health. One out of five caregivers report feelings of depression or anger. The family caregivers experience both financial and emotional strain. The report concludes with saying that there needs to be more health care policy to improve the care plan for individuals with Dementia, which will in turn improve their quality of life.

Difference Between Caregivers and Patients Perceptions of Quality of Life

When studying the affects of dementia on quality of life, it is important that we address the differences between the caregiver and patient perceptions of quality of life. This interpretive research explores care providers’ points of view of their experiences with caring for someone with dementia. It includes interviews with social workers, nurses, home care aides etc. The text informed how one out of every three Canadians over 85 years old will develop Alzheimer’s disease or dementia, and 97% of those with dementia will have an unpaid caregiver.

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Some of the main differences in points of view of quality of life between the caregiver and the patient with dementia are: challenges in regards to service availability (service wait lists, lack of home care provider training and lack of community-based dementia care infrastructure) and challenges of providing in-home care (time for in-home care, difficulty with system navigation, lack of system coordination and financial costs of services).

This source aims to identify factors that are associated with the quality of life of family caregivers of people with dementia. The caregivers completed a quality of life assessment (Nowergian version of the Quality of life-AD scale), as well as rated their own quality of life with the same scale. Moreover, age, gender, occupational status, education, having a hobby and physical activities were taken into consideration in this research as components that could affect the quality of life.

According to the results of this research, factors that are associated with quality of life in caregivers who lived with people with dementia were depression and having a hobby, whereas depression was correlated with quality of life in those who lived separately from dementia patients.


Quality of Life in Different Stages of Dementia

Research has confirmed, as one would expect, that QOL in dementia declines as the illness progresses. However, as Ready points out, this is difficult to measure since there is no agreed upon definition of QOL as well as a lot of variability in measures within dementia patients. Some aspects appear to decline more rapidly than others while others were not found to decrease at all. For example, spending time with family was not found to decrease, while reading declined considerably.

Banerjee et al. attempt to explore the extent to which commonly used measures of specific outcomes in dementia are an appropriate proxy for quality of life. Particularly, the researchers aim to determine if symptoms of dementia affect an individual’s QOL as the symptoms progress. Banerjee et al. performed a cross sectional study to measure the following variables: health related to quality of life in dementia, cognition, functional impairment, behavioural and psychological symptoms in dementia, and caregiver mental health. The results indicated that decreased QOL was statistically significantly correlated with higher levels of behavioural and psychological disturbance. In other words, QOL in dementia does not have a simple relationship with cognition or functional limitations. This suggests that cognitive improvement will not necessarily improve QOL in dementia, but instead, that symptoms of the illness such as depression can significantly reduce the individual’s QOL.

Cordner et al. is among the first studies attempting to examine the QOL in patients with severe dementia. Interest in this area became increasingly recognized as an important clinical and policy concern, yet little is known about this population as they are unable to assess their own QOL. Cordner et al. recognize that with reported inadequacies of end-of-life care for people with dementia, the need to examine this population is essential. The results of this study counter the view that measuring QOL in advanced dementia patients is meaningless. Cordner et al. conclude that improvement in QOL may be possible in late-stage dementia. They noticed in their studies that patients who received pain medication had significantly higher QOL which can be reflected in feelings and mood, enjoyment of activities, and social interactions. The researchers also found, similar to Banerjee et al.’s findings, that patients with behavior problems had significantly lower QOL. They suggest appropriate therapists that can effectively treat behavior problems in advanced dementia in order to improve QOL as death nears. Pain assessment and effective pain management are critical in this vulnerable population, especially as self-reporting is usually impossible.


Improving Quality of Life in Dementia

In terms of improving quality of life in dementia, this article shows how psychological interventions can improve both behavior and mood in people with dementia. This helps as it informs caregivers of how specific attitudes towards people with dementia could improve their quality of life.

There are various ways to improve quality of life such as pharmacological or non-pharmacological interventions. Some of the main positive results of psychological interventions were that they enabled dementia patients to connect with others (communication was made possible), as well as mutual understanding was brought in and social inclusion. Moreover, it was made possible for caregivers to feel that they were positively contributing. For instance, as caregivers interacted with family members, they were able to find the likes, dislikes and preferences of the dementia patient and that was positive to improve their overall quality of life. Finally it is important to provide specific and individual intervention to each dementia patient as they are adjusted to their personal preferences and abilities.

This article describes many techniques and different forms of how to approach dementia and to improve the quality of life of those who suffer from it. Some of them are: cognitive rehabilitation, caregiver training, environmental redesign, activity engagement, memory boards and cognitive behavioral therapy.

One example of environmental redesign would be simplifying the ambient and placing objects in specific places (out-of-sight or in sight). Another example of activity engagement would be employing patients in pleasant activities such as events and exercises. All these techniques were developed with the objective of improving the quality of life of dementia patients.

This article shows a thoughtful approach that can bring a more human death for patients with dementia. It states that the improvement of quality of life can be effective when therapists bring to the treatment the context each patient finds him/herself in. This is crucial as end of life care in dementia studies suggest that dementia patients receive poor quality care both in the community and nursing homes and that affects their overall quality of life in a negative way.

This article states that one in three adults over the age of 60 will die with dementia. Many people with dementia receive poor quality end of life care, but there are some recent government strategies that highlight the importance of such services. For instance, in terms of physical problems, people with advanced dementia suffer from a range of symptoms such as pain and dyspnea, which are poorly detected and remain untreated. Moreover, pressure sores; agitation and eating disorders are very common in people diagnosed with dementia.

According to the text, caregivers should concentrate on social, emotional and cultural needs of the patients. Training and educational programs are important and effective, as they increase satisfaction for dementia patients and family members. A good quality of life can be defined as being pain free and surrounded by those who are close to the dementia patient. New interventions to improve such care will have to be developed carefully considering the setting in which each person with dementia finds her/himself in and the specific circumstances.


Supplementary Material

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The Alzheimer’s Society YouTube channel has a lot of informational videos. Below are two good videos found on their channel.

VIDEO: https://www.youtube.com/watch?v=CASuCQLfvdc

About dementia: The dementia guide
This video provides general information on what dementia is and involves dementia patients discussing the disease. It also explains that dementia is a progressive disease and therefore gets worse over time. It is currently not known why some people develop dementia. Most people with dementia are elderly however some people receive early on-set dementia which is when someone is diagnosed with dementia before the age of 65.

VIDEO: https://www.youtube.com/watch?v=a5fXB0aHOVw

Stigma and dementia-People with dementia speak out
This video shows clips of individuals with dementia talking about how stigma affects them. The video is meant to bring awareness of the disease so that there can be a reduction of stigma around the disease. These people are speaking out to try and show that they are normal people who are just trying to live with their disease. Stigmatization lowers one's self esteem and leads to misconceptions, which affects one’s life chances.


Bibliography

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