Dementia is a progressive and irreversible decline in mental function1. Lewy Body Dementia (DLB) is a form of degenerative dementia characterised by the presence of “Lewy Bodies” which are clumps of alpha-synuclein and ubiquitin protein in neurons2. These are only detectable in post-mortem brain biopsies2.
The manifestations of dementia present themselves clinically as progressive cognitive decline which impairs day-to-day social and motor functioning. This central feature of DLB is essential for the initial diagnosis of the disorder and the initial evaluation of a patient with dementia must establish the presence of cognitive impairment and provide a measure of its severity. Three core features which are significant in the diagnosis of DLB and distinguishing it from these other disorders are2:
1. Fluctuations in both mental cognition and relative levels of attentiveness. The severity and duration of these episodes vary among patients, however, generally, severity increases with time.
2. Visual Hallucinations – characteristically detailed and well-formed; significant in differentiating DLB from Alzheimer’s disease as they are relatively rare in the latter disorder.
3. Spontaneous features of Parkinsonism, such as tremors.
At least two of these core features must be present to conclude that there is DLB3. Suggestive features of the disorder include rapid eye movement (REM) sleep behaviour disorder, repeated falls and transient loss in consciousness. In the absence of a core clinical feature the presence of one or more of these suggestive features may help in the diagnosis of DLB. The differential diagnosis for DLB is mainly Alzheimer’s disease, Parkinson’s disease or other dementia syndromes. However, in Catherine’s case the presence of a number of core and suggestive features strongly indicate DLB.
In relation to Catherine, there are many indicators present which qualify her for diagnosis with the disease. Not only does she exhibit some of the core features mentioned previously but it is also evident that she is suffering from some of the more suggestive, but equally as debilitating, aspects of the disease. It is evident on examination that Catherine is experiencing fluctuations in cognition as her verbal responses are often difficult to comprehend and are unreliable. These memory lapses, along with aggressive responses, are known symptoms of dementia2. She has had some vivid visual hallucinations previously which may be a mitigating factor in her continuous falls, another suggestive feature of the disorder2.
Catherine’s husband faces many challenges as her primary caregiver. Caregiver burden is defined as the high levels of stress and anxiety associated with the provision of care to another person suffering from some kind of illness4. Catherine’s husband is likely to suffer from caregiver burden as he is the sole provider of care and his closest source of relief is his daughter who lives some distance away. He faces challenges in communication and in managing Catherine’s behaviour and struggles with his own physical fitness while also trying to care for his wife. He is likely to suffer emotionally as result of the demands placed upon him as a result of Catherine’s unwillingness to avail of respite care services.
Catherine presents many challenges to the healthcare system in that she is aggressive towards members of staff with whom she is unfamiliar. This impedes upon the quality of her care as nursing staff appreciate her condition but are unable to manage it on an acute ward. The problems with her memory make interactions difficult as she does not remember her surgical treatment and becomes aggressive and agitated at times. It is likely that as the disease progresses these factors will become more serious and incapacitating, leaving her husband with no choice but to admit her to a long-term care facility.
It is difficult to quantify the prevalence of Dementia in Ireland and in various countries due to variances in how we define and ration dementia and also due to methodological variances in conducting studies5. However there remain some factors such as age and gender which show consistencies across studies. It has been found that Alzheimer’s disease is more common in women, and that prevalence of dementia can double with every 5 years of increase in age6.
The Alzheimer Society of Ireland (ASI) estimates that there are currently more than 44,000 people suffering from some form of dementia in Ireland7. It is shown that the prevalence is higher in females than males with 20,000 females and 14,000 males found to be suffering in 2002 and the incidence is expected to increase dramatically in the coming years in correspondence with the aging population in Ireland. By the year 2036 the ASI estimates that there will be over 100,000 people with dementia8.
Studies have shown there are a number of risk factors associated with dementia. Along with age and gender, genetics and BMI have also been linked closely with dementia. One study found that normal-weight women had a greater risk of developing dementia than women with a higher BMI than them9. It has also been found that those with higher BMI have a decreased risk of cognitive decline10. Cholesterol levels have also been linked to the cause of dementia in that high levels of high density lipoprotein have been associated with a decreased risk of Alzheimer’s disease11.
There are a number of known support groups in this country for relatives of patients with dementia7. For example, The Alzheimer Society of Ireland provides a range of services to people with Alzheimer’s disease and other forms of dementia. The Carer and Family Support Groups operate throughout Ireland, usually meeting on a monthly basis7. This support network offers a vital opportunity for carers and family members to share experiences, information and practical advice in a supportive environment and would be of significant benefit in Catherine’s case to provide her husband with an outlet from the constant pressures associated with her disease.
The Irish Government does offer some financial support to people suffering from dementia but it appears not to be enough. There are a number of schemes which provide home care to patients, however a new report illustrates that Ireland spends only half the OECD (Organization of Economic Cooperation and Development) average on dementia services12 despite the fact we rival any other European Country in relation to the growth of dementia. According to the report for every 18,500 euro cut, four people with dementia will lose any service provided by the government12. This would be detrimental in Catherine’s case as she may eventually rely heavily on the government for support.
Healthcare Quality and Patient Safety
The treatment of Dementia is focused towards specific disease manifestations as there are no definitive treatments available. To effectively treat Dementia, patients and families should be involved as soon as the diagnosis is made. The availability of information, good health services, and support should be provided to help patients and their families to cope with dementia. The behavioural and psychological symptoms of dementia have been a difficult management area for neurologists and psychiatrists alike. The key to proper management is the correct identification of each symptom and the underlying precipitating cause. The proper management is not only rewarding in terms of responsiveness in an otherwise incurable and progressive disease, but also improves the quality of life of the patients and the caregivers.
The management of dementia begins with a thorough assessment to search for underlying causes of behavioural changes. Non-pharmacological approaches should be used prior to medication use. These interventions include music, light, changes in level of stimulation and specific behavioural techniques. The type of dementia, individual symptom constellation and the tolerability of the patient will help to determine what medication should be used13.
Cholinesterase inhibitors treatment for people with DLB is commonly used in clinical practice, especially for patients that exhibit neuropsychiatric symptoms. The use of antipsychotics for agitation and aggression has shown consistent efficacy and it is the most studied pharmacological intervention14. Pharmacotherapy must be monitored closely for both effectiveness and side effects, with consideration of medication withdrawal when appropriate. Studies show that anti-dementia medicine neither cure, arrest nor delay the onset of the disease, but are helpful in symptom relief14. There is an urgent need to develop more efficacious medications for the treatment of dementia15 as in the long-term we know that a diagnosis of dementia is a sentinel event that signifies progressive loss of independence and increasing demands on caregivers.
In this case, the biggest barrier to Catherine receiving adequate healthcare is herself and the uncooperative and aggressive nature of her condition. Her husband and family cannot fully support her needs therefore she needs to be admitted to a long-term care facility. Her wishes to continue living in her own home may prevent her from getting the care she needs. Also, the fact that her husband must make the decision could be considered a barrier as he is unwilling to put her into long-term care, where the stability may help her.
Individualised rehabilitation approaches targeting relevant and personally-meaningful aspects of everyday functioning have demonstrated significant benefits in single-case and small-group intervention studies16. Cognitive rehabilitation is a relatively new approach to improving well-being for people with dementia and their families, but at present only preliminary evidence regarding efficacy is available16. However, this preliminary evidence suggests that cognitive rehabilitation does have the potential to bring about changes in behaviour, enhance well-being and maintain involvement in daily life. Psychosocial interventions of this kind can be provided alongside pharmacological treatment, and it is possible that these two approaches can complement one another to optimize benefits for the person with dementia17. There are a great many questions still to be answered, but the existing evidence provides a valuable basis for further development of this approach.
There are a number of ethical issues to address in Catherine’s case. As DLB progresses, it gradually renders people incapable of tending to their own needs, thus their decision-making capacity is compromised and caretakers must step in and make decisions for them. Catherine suffers from dementia and requires constant care. In preventing Catherine from independently getting in and out of bed, several ethical issues are involved. Her caretakers can only effectively tend to her and ensure her safety by compromising her right of autonomy for the sake of beneficence18 i.e. doing this for her own well-being in order to provide her with adequate care. Also non-maleficence18 is a factor in this situation i.e. they must ensure she does not get harmed while moving about unsupervised
In Ireland, under the Mental Health Act of 2001, certain conditions must be must be met before someone is involuntarily admitted to a long-term care facility19. Fundamentally
The patient must be eligible to be involuntarily admitted
The “Person” sending the patient must send in application for the patient
That “Person” must fit certain requirements.
After application, a registered medical practitioner must do an examination on the patient and if he/she is satisfied, he/she writes a recommendation for the involuntary admittance of the patient in an approved centre.
Catherine definitely fits the requirements of the patient to be involuntarily admitted as she is actually suffering from a mental disorder20 and her caretakers may be considered “unfit” to take care of her. While her husband wants to respect her wishes he is physically unable to provide the level of care that she needs, even with his daughter’s weekly assistance. It is obvious that she requires constant monitoring as evident by her repeated falls. Therefore, after a mental health assessment it is likely that she be recommended to live in such a facility with more appropriate care21.
Healthcare providers are only able to advise patients and their family members on the best course of treatment and management plan available, suggesting alternatives are still within their boundaries. However, the final choice always resides with the patient and his/her family members22. Disputes which may arise become a tough issue for health care professionals to resolve, as all circumstances need to be taken into consideration before a decision can be reached23.
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As part of our search strategy we used resources from the library and those online. We found books and journals in the library useful for sourcing background information about Lewy Body Dementia. Online we used medical search database, “Medline” and “PubMed.” We had to tailor our search criteria to suit the particular section of the report we were writing. To further refine our search findings we used the advanced search and used the “limits” option. If our search yielded too few findings, we learnt to change our keywords and to broaden our search area. For example when “Dementia” is searched PubMed reveals 119494 options, however if “dementia AND Ireland” is searched 404 results are revealed. To further refine this search we used “Limits” whereby we limited the findings to trials that had links to the free article online, were in English and were conducted on humans. This searched revealed 60 findings.
It is also useful to use sources that have been referenced by other authors and we found that once you found one or two good trials, they usually had referenced some other sources that matched your search criteria. This cut down on the searching through irrelevant articles and proved better use of our time. All in all we found the internet very useful for sourcing our references and in particular we found PubMed and Medline user friendly once we understood how to use them properly.