Introduction
Dementia was an illness which consisted of a group of symptoms characterized by reduction in memory, impairment in the reasoning skills and slow decline of skills required for daily living. Changes in the brain, both structural and biochemical, caused these illnesses. The condition was defined as “a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment” (WHO, 2007). Dementia was a disability which could occur at any age but affected mostly the elderly beyond 60 years.
The Aging, Demographics, and Memory Study (ADAMS) indicated that dementia in some form was found in 3.8 million of people in the US (Plassman, 2007). Older populations which were progressively becoming larger were bound to have more dementias (Shagam, 2009). Of the people older than 71years, the incidence was 14% of the population of 35 million. By 2030 the population was expected to double to 70 million. This would warrant the effective management of dementia for socioeconomic reasons (Anderson, 2007). Annual global costs of management of dementia reached to more than $315 billion (Shagam, 2009).
The US alone incurred costs of $100 billion (Worldwide cost, 2007). Despite all the efforts to provide care and the large amount of costs of treatment, the plight of the dementia patients was still not any better. The quality of life was something to be immediately put right. Dementia affected the family care-givers extending their stress in managing a job and caring for the dementia patient together. The intense pressures led to fatigue, depression and chronic illness.
The chances of care-givers dying earlier than people who were not care-givers were 63% greater (Schulz, 1999). A few varieties of dementia had been recognized. These included “Alzheimer’s disease, vascular dementia, fronto-temporal dementia and dementia with Lewy bodies” (Shagam, 2009). Primary care and community care were recommended (Congden, 2007). The hypothesis concerns how the quality of life of patients with dementia could be improved.
Statement of the problem
The memory loss, deficits in executive functioning and a lesser cognitive functioning caused the persons with dementia to lack competence and be unable to manage their affairs (Shagam, 2009). The quality of life they had in their aging days was miserable and demanded a drastic change. Dementia was neither preventable nor curable and could not be delayed. The sharp rise of the population with dementia had become a reality with shocking statistics.
The helplessness of these people had stimulated me to do something in favor of them. This study will be in search of methods to ensure that the aged with dementia were recognized sufficiently early, and provided ample opportunity to be cared for by the community, be it family members or professional carers or the community in the neighborhood so that the expected poor quality of life was reduced. The failure of diagnosis was never to be the reason that they went without assistance or care. Each patient had the right to live a good quality life just as others. Let us make them happy by caring for them as our own. This writer will be focusing on finding ways to improve the quality of life for the elderly with dementia through a search of relevant literature.
Prevalence
The prevalence of dementia in the US has been depicted in Chart 1 on the next page. It shows very obviously the prevalence in the older age groups (Plassman, 2007). The prevalence in the European countries was assessed from a population study in 1990, the EURODEM (Alzheimer’s disease International, 2008). According to Luengo Fernandez, UK has 820000 people with dementia (2010). The strategy for the US had been included in the Healthy People 2010 document and improved as the 2020 objectives. The goal of care for dementia was “to reduce the morbidity and costs associated with, and maintain or enhance the quality of life for, persons with dementia, including Alzheimer’s disease” (Dementias including Alzheimer’s disease, HealthyPeople.gov).
Background
The dementia patients had problems of memory loss and cognitive deficits. This section deals with the pathophysiology involved in dementias so that the reader understood the reasons for the illness. The different types of memory were affected in dementia. Memory was the ability to retrieve stored information. The amygdala and the hippocampus in the brain were directly involved with this function. Declarative and non-declarative types of long-term memory had been recognized (Shagam, 2009).
Storing the facts and retrieving them by conscious recall was termed declarative memory. The semantic memory and episodic memory were the divisions of declarative memory. The semantic memory helped a person to remember general facts and knowledge. Episodic memory assisted in remembering personally witnessed events or experiences. The implicit or non-declarative memory referred to the ability to do things from the experience of learning. These various memories were built into our system without us thinking about them (Shagam, 2009). Working memory was the ability to recall information recently learned like phone numbers and addresses. Remote memory brought back memories of the time long gone by.
The older people who had degenerating nervous systems soon lost these normal functions that facilitated the wonder of memory. What these patients were previously doing well was now forgotten due to the degenerating brain cells recognized as atrophy in imaging records. The fumbling and uncertainty, memory lapses, inability to remember their daily activities and asking the same questions repeatedly were all features of dementia (Memory loss with aging, AAFP).
Alzheimer’s dementia had slightly differing features. The Alzheimer’s was the world’s sixth leading cause of death (Alzheimer’s Association, 2011). This dementia showed decline in the language and defective decision-making abilities. The inability to retrace hidden objects was a typical feature. Soon incontinence of the GIT and Urinary systems made the life of the patient terrible. Their total dependence on carers was inevitable.
Vascular dementia came next in prevalence (Shagam, 2009). The fronto-temporal dementia occurred because the degeneration was focused in that region. Dementia with Lewy bodies had hallucinations, and delusions, sleep alterations and disturbances in the heart rate and digestion. The Lewy bodies were aggregates of alpha-synuclein, ubiquitin alpha B-crystallin and neurofilament proteins (Shagam, 2009).
Diagnosis
Evaluation in the primary care settings was necessary to reach out to and recognize many dementia patients. Treatment challenges were influenced by staff being unable to identify symptoms. The limited time for detailed examination was a problem. Patients did not complain due to the concept that management was not available for dementias including Alzheimer’s. Cognitive assessment could be enabled by the Mini Mental State Examination (Shagam, 2009).
The perceptions of staff at a primary care center to issues concerning dementia
Harris et al had a randomized controlled trial whereby the perceptions of primary care providers on different aspects of care for cardiovascular disease, diabetes mellitus and dementia were compared (2009). It was found that care providers believed that it was difficult to manage dementia when compared to the other two. Similarly they thought that it was hard to improve the quality of life of patients with dementia.
Routine screening was done for dementia almost as often as for the other two illnesses. Referral was common with diabetes and heart disease but rare for dementia. Effortless care coordination was also not possible for dementia as it was an illness which had a variety of symptoms requiring individualized care. Primary care management of dementia was to focus on referral resources, reduce the difficulty of provision of care and consider the perceptions of the providers for quality-of-life improvement (Harris et al, 2009). Primary care providers could be the earliest people who diagnosed the patients with dementia.
Thought the study results showed that dementia patients were almost neglected by these care providers. The reason could be their ignorance or their lack of time or their feeling that dementia did not merit a reference as it was not treatable. Sufficient training of primary care providers and precise policies for implementation could change the attitude towards dementia. The clustered chart in the next page has been drawn from the study results of Harris et al (2009).
Aggressiveness in dementia
Moniz-Cook and Clarke (2011) had addressed aggressiveness that was found to create chaos in nursing homes. They perceived that 6.9-30% of behavioral problems in nursing homes were accounted for by aggression, one challenging behavior in dementia. Challenging behaviors was a subjective term which explained the responses of the patient of being unreasonable or intense (Keady and Jones, 2010). They were formed from experiences and beliefs.
Aggression, a manifestation of psychosis, was to be treated with antipsychotic drugs for 2 weeks. The internal environmental factors like worry, fear, pain due to some health condition and discomfort were triggers for aggression. External factors included excessive anxiety, incessant conversation and busy episodes in life (Moniz-Cook and Clarke, 2011). Insufficient spaces, the reverberating noise, heat and cold were the accommodation factors which sparked off aggression. One-third of patients did not exhibit aggressiveness. The duration of treatment with antipsychotics was to be determined after weighing the pros and cons of the side effects, the cognitive reduction and death. In general the poor quality of life was evident when the drugs were used (Ballard et al, 2009b). The institution of enhanced psychosocial care could reduce the use of drugs (Fossey et al, 2006).
The causes could be due to distress stimulated by unmet needs which could be physiological, psychological or social. The deficit in the mechanisms for self-control found in frontal lesions could increase the risk of aggression. Hallucinations could trigger aggression (Leonard et al, 2006). Individualized care was recommended. The lack of interpersonal relationship lay behind the aggression which was mostly aimed at the staff. Coping mechanisms which reduced aggressive resistance needed to be chosen (Moniz-Cook and Clarke, 2011).
Classification
The stages of the dementia decided how much to intervene. A patient-centered approach could reveal the behavior behind the person. Subsequently interventions could be devised. Three stages were recognized in dementia (Keady and Jones, 2010). Impaired performance marked the first mild stage but the patient had not reached the stage of helplessness. Complicated tasks or leisure activities could not be performed. The moderate stage showed a further cognitive decline and the patient needed help to execute his daily activities like shopping and handling of money. Increasing restriction of activities was observed. The severe stage saw the patient without intelligible ideation (Keady and Jones, 2010).
Interventions
Several interventions which had worked with dementia included “reminiscence therapy, reality orientation, aromatherapy, music therapy and multi-sensory stimulation” (Keady and Jones, 2010). Problematic behavior was decreased through three interventions as described by James et al (2008). However these therapies had not considered the causes of dementia while being used (Keady and Jones, 2010). Unmet needs were the significant causes as they included all the factors mentioned under aggression (above). The disease could begin due to the patient attempting to satisfy his unmet needs. Interventions were modified to the requirements of the individual (Keady and Jones, 2010). The final “destination” was the improvement in the quality of life and elimination of suffering.
Care Plans
Keady and Jones indicated that an individualized care plan for their case study produced good results by one month (2010). Challenging behaviors of aggression and agitation had decreased. The patient was happier and contented. Then he was provided a patient-centered care with appropriate support. He also became more receptive of therapeutic interventions (Keady and Jones, 2010). The individualized care plan had succeeded in toning down the challenging behaviors and rendering the patient more amenable to suitable therapeutic interventions. Improvement of quality of life inevitably happened with the change in personality of the patient.
Management of daily living
Dementia patients who were living at home with their families or group homes or nursing homes preferred to be included in decision-making about their care. These people subsequently had improved well-being and positive demeanor (Oliver et al, 2010). Carers also believed in sharing the decisions on care with the patients. However communication problems and cognitive deficits hampered the involvement. A Talking Mats framework which was suggested by Murphy et al in 2007 indicated a bigger involvement of patients and families than when discussion through mere conversation was implemented (Oliver et al, 2010).
Picture symbols placed on textured mats were used for expression of views by people with communication difficulties. Some cards were picture-free to add the views of the patients. Oliver’s research using the Talking Mats reported some beneficial results. The participants including the patients and the families were perceived to be more involved with decision-making than through conversations (Oliver et al, 2010). Photographs of the experiment and specifically of the finished mats were taken to study them further. Notes were written in detail too. The dementia patients could manage personal care except for washing, dressing and taking of medicines in which functions they needed daily help (Oliver et al, 2010).
Dementia-friendly neighborhood
The only research exploring the interventions for dementia in the neighborhood was that of Mitchell and Burton (2010). The design for dementia-friendly neighborhoods required the surroundings to be familiar. Spatial disorientation, confusion and anxiety were not to subject the patient to difficulties. Legibility of the signs for different designated buildings was to be ensured. Accessibility was a must. The people in the community needed to enjoy the surroundings. Safety while moving around was significant; harm was not to occur. The primary services were to be incorporated within 500m. of the house and secondary services within 800 m. (Mitchell and Burton, 2010). The services of physicians and psychiatrists were to be arranged within this community.
The Biopsychosocial model
The biopsychosocial model was perceived to be an integrated method of consideration of health and illness (Cwikel, 2006). The components of the sociological, psychological and biomedical models had been incorporated. Four lines of thought were included in this. The formistic thinking divided people into ‘cases’ and ‘not cases’ categories. Mechanistic thinking dwelled on the causes for a particular result. The contextual thinking was also called relational thinking. It related an organism to the illness. However the patient was to be focused upon in dementia. Organic thinking spoke about the interaction between many causes which then progressed into many phenomena.
The Biopsychosocial model incorporated the contextual and organic forms of thinking (Cwikel, 2006). It was an interaction of complex proportions of the factors relating to the “environmental, psychological, sociological and cultural” entities (Cwikel, 2006). This model suited the present study of dementia. Dementia had many causes which were “biological, behavioral, psychological, cultural, social and genetic” (Cwikel, 2006). The same causes could produce different extents of dementia.
A mind-body unity was obvious in dementia. The mental problems involved emotional, physiological, biological and physical aspects. Treatment was not the intention of the study. Mere maintenance of health was aimed at. A multidisciplinary approach could be the best here (Cwikel, 2006). Psychosocial issues were significant in dementia studies: the patients would be finding ways to assume the role of a healthy person. For these reasons, the biopsychosocial model was found to be the best to study dementia. This model helped in understanding the external and internal influences of the individual (Sperry, 2008). Engels (1977) was the father of this model.
The biological issues, psychological issues and the sociological issues were to be considered equally to study a person or illness. The biological functioning referred to the subcortical systems of the neuroendocrine, autonomic and central nervous systems (Sperry, 2008). The psychological functioning pertained to the cortical and self-conscious internal system. This included the processing of information and communications. The personal feelings, goals and aspirations came under this system. The social functioning and relationship with family, friends, neighbors and community were regarded under the sociological functioning (Sperry, 2008).
The picture on the next page depicting the biopsychosocial model could be interpreted thus. A number of stressors could induce illness. These stressors along with coping efficacy and the neuroendocrine function status determined an episode of illness. If the coping mechanism was poor and the neuroendocrine system was of low function, the illness resulted. Brain pathways and effects like pleasure could be poorly buffered from influences of the external environment. When a huge stressor occurred, the interpretation of the patient could be that he could soon be experiencing a similar stressful episode of earlier times like a separation or bereavement. The patient escaped the after-effects of the huge stressor if his coping mechanism and social supports were adequate (Sperry, 2008).
Individual Psychology model
Individual Psychology was a new development of the biopsychosocial model (Sperry, 2008). In addition to the functions of the biopsychosocial model, this new addition had integrated the holistic functioning.
Biopsychosocial models would soon become a natural part of psychotherapeutic research and treatment protocols. The Individual Psychology model which was an improvement on the biopsychosocial model also would be adapted. The addition of the holistic care added to its value.
Quality of Life Assessment through the biopsychosocial model
Better health care revolves around what quality of life means to the patients (Debb and Blitz, 2010). Dementia patients would have many requirements when they become helpless as they progress from the mild to the severe stages. The biopsychosocial theory analyzed the three aspects of dementia: the biological, psychological and the sociological aspects. The information obtained would be sufficiently vast to identify the patient’s health status including the illnesses or drawbacks he suffered from. The factors analyzed could be the determinants of quality of life like personal attitudes and beliefs. The sociopolitical factors could be “community influence and education” (Faleiros and Machado, 2006).
This model was more “multimodal, symptom-focused, problem solving-oriented, and aids in the development of specific treatment goals based on the individual” (Sperry, 1988, 1999 in Debb and Blitz, 2010). Discovering organ deficiency was another strong advantage of the biopsychosocial model. The clinician understood the illnesses that his patient had apart from the dementia and this model ensured that he did not miss this diagnosis. Investigating the biological deficiencies could help to co-relate them to the environmental stressors.
The presence of several stressors caused psychopathology and the appearance of many new illnesses (Adler, 1927 in Debb and Blitz, 2010). The life tasks of the patient would be affected. The inferiority complex could act as a motivating factor for good and bad results. The behavior of the patient was found altered as a mechanism to face stress. The exploration of the quality of life from a holistic viewpoint could provide the clinician with plenty of information. The systems theory underlies the biopsychosocial model (Debb and Blitz, 2010).
The hypotheses generated were:
- The quality of life of the dementia patient improved with the individualized plan of care.
- The quality of life of the dementia patient improved through the competence of the primary care providers
- The quality of life of the dementia patent improved with the change in perceptions of the primary care providers
- The quality of life of the dementia patient improved through the use of the biopsychosocial model.
- The quality of life of the dementia patient improved with the use of the Individual Psychology model.
- The quality of life of the dementia patient improved with a dementia-friendly neighborhood.
- The quality of life of the dementia patient with aggression improved through the major use of the psychosocial therapy and lesser drug therapy.
Conclusion
Dementia was an illness which consisted of a group of symptoms characterized by reduction in memory, impairment in the reasoning skills and slow decline of skills required for daily living. It was a disability which could occur at any age but affected mostly the elderly beyond 60 years. Statistics say that 3.8 million of people in the US had dementia (Plassman, 2007). Of the people older than 71years, the incidence was 14% of the population of 35 million. Annual global costs of management of dementia reached to more than $315 billion (Shagam, 2009). The memory loss, deficits in executive functioning and a lesser cognitive functioning reduced the quality of life in the aging days (Shagam, 2009).
Each patient had the right to live a good quality life just like others. Among the many perceptions of primary care providers one significant point was that they thought that it was hard to improve the quality of life of patients with dementia (Harris et al, 2009). They also believed that care coordination could not be provided for dementia like it was done for diabetes and heart disease. Primary care management of dementia was to focus on referral resources, reduce the difficulty of provision of care and consider the perceptions of the providers for quality-of-life improvement (Harris et al, 2009).
Sufficient training of primary care providers and precise policies for implementation could change the attitude towards dementia and make diagnoses after screening. Challenging behaviors referred to the responses of the patient of being unreasonable or intense that could be managed through coping mechanisms in the form of individualized care (Moniz-Cook and Clarke, 2011). The care plans had to be altered as required for each stage of dementia. Therapeutic intervention had to be adjusted according to the unmet needs of the patient which were the significant causes (Keady and Jones, 2010).
Keady and Jones indicated that an individualized care plan for their case study produced good results by one month (2010). The patient was happier and more willing to accept new therapies by one month. The individualized care plan had succeeded in toning down the challenging behaviors and rendering the patient more amenable to suitable therapeutic interventions. Improvement of quality of life inevitably happened with the change in personality of the patient. In Oliver’s study, the participants including the patients and the families were perceived to be more involved with decision making using the Talking Mats concept than through conversations (Oliver et al, 2010).
Dementia patients who were living at home with their families or group homes or nursing homes preferred to be included in decision-making about their care. Their outcomes turned out to be better. The designing of a dementia-friendly neighborhood enabled the involvement of the neighboring community in the dementia caring. This neighborhood also allowed the dementia patients to move out of their homes for their daily activities as long as they could (Oliver et al, 2010).
Accessibility to primary and secondary services within 800 m. of their home and the ensuring of safety enabled the patients with dementia to live a more satisfying life in the midst of all that was required for managing themselves. When they became helpless, community care was to be arranged for them. The availability of clinicians for their approach could be arranged. The biopsychosocial model was a good model for assessing the unmet needs of the dementia patients and then instituting appropriate therapeutic interventions as it unearthed evidences of the biological, psychological and sociological aspects of the dementia. Therapy would be more complete due to the several causes elicited.
Individual psychology was an improvement on the biopsychosocial model by adding the holistic concept. The factors analyzed included the determinants of quality of life like personal attitudes and beliefs (Debb and Blitz, 2010). Discovering organ deficiency was another strong advantage of the biopsychosocial model. The presence of several stressors and the co-relations could be studied and the reason for the patients converting to psychopathology could be better understood.
The exploration of the quality of life from a holistic viewpoint could provide the clinician with plenty of information (Debb and Blitz, 2010). This search through literature enabled me to confirm that the quality of life of dementia patients could be improved through individualized care plans, the use of the biopsychosocial model and its extension Individual psychology for investigation of dementia and the dementia-friendly neighborhood. Primary care providers were the people who would screen the patients and provide therapy or refer the patients as necessary. The search through the literature had unearthed plenty of ways that made my study worthwhile.
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