Living With an Alzheimer Patient in Turkey

Abstract

The research was performed to determine the problems that caregivers experience with patients with Alzheimer disease. The research was carried out qualitatively with those who were responsible for the care of eight Alzheimer patients who were being treated at the Neurology Polyclinics of Gevher Nesibe Hospital at Erciyes University in Kayseri, Turkey. Research data were collected through questionnaires designed to understand the characteristics of the individuals who provided care and focus group interviews. A written consent from the institution and an oral as well as written consent of the individuals were obtained. Focus groups were interviewed in the same setting at different times with two different groups, including four people who agreed to participate in the research. Each interview was conducted by three personnel: a moderator, a reporter, and an observer. Interviews were structured under four main titles: "The changes seen in the individual with Alzheimer disease"; "Physical, social, psychological, and socioeconomical problems that caregivers experienced"; "Precautions taken against the problems"; and "Patients' expectations of the care". The interviews lasted for approximately 2 hours. A voice recorder and a written registration form were also used to collect information. Six women and two men constituted the research group. The caregivers stated that the patients had such difficulties as forgetfulness, nervousness, jealousy, childish behavior, deterioration in speech, fear of water, hallucinations, and difficulty in carrying out daily life activities. Caregivers emphasized the fact that they perceived the changes in the patients as deliberate behaviors and thus became annoyed and quarreled with them before diagnosis; however, after diagnosis, they felt remorse and experienced guilt because of their ill-treatment of them. In addition, the caregivers hid the patients and their disease from social surroundings. Caregivers mentioned that they had felt as someone who was helpless, exhausted, and abandoned; they lost their freedom and lacked their taste for life. They felt no confidence in someone else caring for the patient; thus, they neglected their own personal needs. Caregivers reported that they often cried and started to smoke because of these problems. They took precautions, such as making identity cards, helping the patients with their daily life activities, not changing the current order at home, and not leaving the patients alone. Caregivers expressed a desire for assistance from home healthcare personnel, a reliable nursing home where they could leave the patient, and a support group to whom they could share their problems. It was found that the caregivers who provided care to patients with Alzheimer disease experienced multidimensional problems, could not find any professional support, and needed institutional assistance.

The Role of the Home Environment in Dementia Care and Support: Systematic review of Qualitative Research

“…Studies pointed to the disruption of the sense of homeliness ; home was changing its homely character and gaining more of an institutional look, gradually becoming a place of negative experiences and a medicalised space, for example, bedrooms resembling a hospital room (de la . From the carers' perspective, the findings highlighted the lack of privacy and personal space (physical and emotional) as a contributing factor to the home experience being disrupted (Dröes, 2006;Spring, 2009;Olsen, 1996), smells and disposal of waste as distressing and embarrassing (Drennan, 2011), and feeling like a prisoner at home (Taşcı, 2012). Homes were transformed into hybrid places, 'almost-homes', where family life is combined with clinical care and identities were merged (de la Cuesta, 2005).…”

“…Maintaining familiarity, habits, regulated and simple routines, setting up systems, and keeping the aesthetic aspects and order in the environment (items and favourite furniture in specific locations) was important to carers and people with dementia (Askham, 2007;Dröes, 2006;Harris, 2006;Hogan, 2003;Nygård, 2002;Nygård, 2003;Nygård, 2008;Olsen, 1996;Olsson, 1998;Redfern, 2002;Richter, 1995;Taşcı, 2012;. However, in one publication (Redfern, 2002) some carers mentioned that they objected to keeping the routine.…”

“…Apart from maintaining familiarity, a number of other controlling and monitoring strategies were reported in the included studies. These were: using furniture to block access (Dodds, 1994;, controlling or locking the use of appliances (de la Nochajski, 2013;Olsen, 1996;Taşcı, 2012;Toot, 2013;Yang, 1997), controlling water use and temperature (Lach, 2007;Olsen, 1996), controlling radiator temperature (van Hoof, 2009), locking the electric box (Yang, 1997), controlling or locking the exit/access to spaces and objects (Askham, 2007;de Witt, 2009;Dodds, 1994;Lach, 2007;Nygård, 2002;Olsen, 1996;Olsson, 2011;Richter, 1995;Taşcı, 2012), installing gates or folding doors (Olsen, 1996), using childproof locks (Olsen, 1996;Olsson, 2011), just shutting the door (Dodds, 1994), or removing keys from doors . One study (Taşcı, 2012) reported that locking doors made the person with dementia panic.…”

“…These types of strategies included: removing items and replacing items (e.g. rugs, flooring), de-cluttering and house cleaning Lach, 2007;Olsen, 1996;Taşcı, 2012), hiding and disguising objects and spaces (Lach, 2007;Olsen, 1996), reducing distractions and avoiding exposure to irrelevant or multiple (visual and/or auditory) stimuli (Nygård, 2002;Richter, 1995;van Hoof, 2009;Vikström, 2005). A home environment which is too noisy or too busy was considered negative (Dröes, 2006).…”

Family Physician–Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review

“…Social support 53,56,58,59,62,67,75,81,87,88,91,97 Needs to have social outlets such as time alone, social interaction with friends, opportunities to shop and to go out.…”