Caregivers of Dementia patients

Vascular dementia is the second most common form of dementia after Alzheimer’s disease. Caused by problematic supply of blood to the brain, symptoms include challenging communication, depression and anxiety, strokes, physical weakness or paralysis, confusion, changes in behaviour and difficulties in walking and unsteadiness. This paper discusses the problems faced by caregivers of patients suffering from vascular dementia who are above the age of 65 and possible recommendations to improve their plight through the review of the movie, Amour (a movie about an octogenarian couple, Georges and Anne, where Anne develops vascular dementia) and current literature pertaining to the topic.

Georges “Put yourself in my place. Didn’t you ever think it could happen to me, too?

Anne: “Of course I did. But imagination and reality have little in common.”

Anne’s sudden speech arrest and frozen stare at the breakfast table with no recollection afterward are the first signs of a partial seizure. Caregivers, like Georges, who are not prepared for looking after patients are under pressure because of their increasing needs. Georges does not seem to mind this responsibility of taking care of her initially, but Anne’s condition deteriorates fast. She experiences profound right sided weakness and is bound to the wheelchair. Georges struggles to lift her from the wheelchair and make her sit on a chair or go the bathroom. Increased stress in his behaviour is noted when he is unable to sleep at night and begins smoking again. He also wakes up wailing after a nightmare. Despite his obvious incapability to cope with her illness, Georges does not hospitalise Anne, respecting her wishes and dismisses a hired nurse, since she is not compassionate and caring. Research has shown that caregiving is extremely taxing and exhausting. The caregiver faces the prospect of social isolation, lack of time for self, financial drain and unrelieved heavy physical labour in caregiving (Archibold, 1982; Brody and Lang, 1982). This is mirrored in the physical and mental stress that overtakes him and in helplessness he slaps Anne when she refuses to take medicines and fluids. Since Georges and Anne, both retired pianists find solace in classical music, Georges often plays music to soothe both their nerves. Many of Schubert’s pieces are played throughout the movie and might have helped delay Anne’s dementia. Music alters the different components of the disease through sensory, cognitive, emotional, behavioural and social impacts. A study by Guetin et al (2009) shows significant reduction in medication given to dementia patients. A music therapy protocol, specifically tailored to the patient's needs is shown to significantly reduce anxiety, depression and aggressiveness in patients and also in relieving the emotional and physical burden experienced by the main caregiver. Initially, Anne is calmed and urges Georges to play the piano when he stops but as her strokes become more severe she asks the music to be stopped.

Persons providing care to patients of dementia are in poor physical health when compared to other caregiver groups, as shown by studies of immune system changes and physical symptoms. Moritz et al. determined that male caregivers who looked after their own wives had a higher systolic blood pressure than caregivers of other diseases, whereas Shaw et al (2003) determined that 67% of caregivers were at risk for hypertension. It is also indicated that caregivers of Alzheimer’s patients use more medication and get more medical support as compared to caregivers for other types of disease. After analysing over 1500 family caregivers Ory et al (1998) found that dementia caregivers spent significantly more hours per week providing care than non- dementia caregivers.

Colvez et al. (2002) reported that a patient’s disability level is strongly related to the caregiver’s energy deficit, emotional reaction frequency and experience of social isolation. Thus, Georges flagging responses to Anne’s cries for help and his inability to help her speech impairment may be a cause for her rapid loss of motor control. This coupled with Anne’s refusal and shame in asking for Georges help in carrying out daily activities like bathing, going to the toilet and constant feeding etc. is supplemented by Chang et al.’s (2010) findings of higher levels of physical support to be associated with poorer mental health, a higher care burden, a greater number of illness symptoms and chronic conditions, and a lower self-perceived health score.

In a shocking scene, Georges suffocates Anne by holding a pillow over her head. This movie offers no right or wrong answers to Georges’ actions but opens up a lot of questions regarding care of the elderly and caregivers health. Recommendations for appropriate care for the same are now discussed.
Faren et al (1999) have developed a measure to assess positive aspects and ways that caregivers find meaning through their experience of caring for a person with dementia. The measure has three subscales: Loss/Powerlessness, which identifies difficult aspects of caregiving; Provisional Meaning, which identifies how caregivers find day-to-day meaning; and Ultimate Meaning, which identifies philosophical/religious/spiritual attributions associated with the experience of caregiving. Since this measure is useful for understanding the close relationship between both the difficult and positive aspects of caregiving it is recommended that each caregiver be administered this measure.
In addition, the Camberwell Assessment of Need for the Elderly (CANE) must be administered since it structurally evaluates the need of the elderly. Castilo et al (2013) administered this scale among professionals, caregivers and patients of dementia to see the difference in perceived needs among the three groups and bridge the differences between them. Their findings show that people with dementia reported fewer needs compared with the reports of their caregivers and the professionals. Caregivers and professionals reported daytime activities as the most frequent unmet need whilst people with dementia considered psychological distress as the commonest unmet need. These results confirm the importance of assessing the needs of people with dementia by considering their own views.
Supplementing careful assessment of the patient and caregiver, psychological intervention has demonstrated to reduce caregiver distress and delay nursing home administration. Research by Heyn et al (2004), Eggermont et al (2006), Rolland et al (2007) and Potter et al (2011) has shown beneficial effects of physical exercise on the cognitive, physical and behavioural functioning of people with dementia and benefitted the relationship between the patient and caregiver. Lastly, the development of the Systematic Care Program for Dementia (SCPD) by Spijker et al (2009) assesses the caregiver’s sense of competence and suggests how best to deal with competence deficiencies. This study aims at delaying the need of institutionalisation and providing cost-effective ways to finance the economical aspect of caring for a person with dementia. Direct action by the trainers in this program looks after psychoeducation, psychosocial care, medical care, how to hand over care, legal care, case and crisis management. Though still underway, the research seems promising and useful in aiding caregivers to care for patients that minimise burden and maximise feeling of competency. Accounting for healthcare for patients and caregivers is an aspect that every government must look into since demographics show that people over the age of 60 will outnumber children and the youth for the first time in 2019. http://www.unfpa.org/pds/ageing.html Bibliography
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