Abstract

Irreversible dementia is challenging for everyone concerned. The majority of research has placed emphasis on causation as opposed to enriching the elder's lifestyle post-onset (Cooney, 2003). In a multi-method approach to data compilation, the following ethnography examines the interrelations between elders with dementia, their primary caregivers and their immediate family members within a residential environment. Methods included seventy hours of participant observation, four case studies, and detailed interviews with care staff and family members. Using symbolic interaction and thematic analysis to interpret the data, six themes were identified: security, abandonment, attachment, verbal and nonverbal communication, and interrelation through touch. A variety of skills used in avoiding challenging behaviour are presented, with a view to extending these skills across dementia care settings to encourage continuity of care in the home.

Key Words: Abandonment, attachment, challenging behaviour, interrelation and security.

Key Terms: Interrelation: (Caspi, Bem, Elder, 1989).Communication between two people where each person depends on, or is affected by the other, and the understanding that develops from that interrelation.

Symbolic Interaction: (Blumer, 1969). Symbolic interaction is an interpretive inquiry of how self and social environment mutually define and shape each other through meaningful communication.

Research Question
This research was an exploratory study developed to investigate the strategies used by caregivers to build interrelations, and defuse challenging behaviour in elders with dementia living in residential care. With caregiver burnout in dementia on the increase and restrictions placed on respite, the burden of providing full-time care has placed an increasing demand on those who provide that care (Ostwald, Hepburn, Caron, Burns, Mantell, 1999). This study identified skills used in reducing burden on the dementia caregiver whilst increasing the quality of life in the elder through interactive communication. Transferable to other dementia settings, these skills can be utilised to encourage continuity of care in the home.

Introduction
Until recently, the emotional journey of dementia has been largely neglected by research (Cottrell & Schulz, 1993). Due to increased longevity and numbers affected, the impact of dementia on caregivers, dependants and their families has grown exponentially (Lieberman & Tobin, 1998). Dementia has suddenly become a real threat to society (Hoyert & Rosenberg, 2001). While the risk of dementia increases with age there is no single clear-cut cause, and no sure means of prevention. While psychiatrists often explain dementia as progressive cognitive impairment (Katzman, 2003), scientists maintain dementia as an interaction between genetic, environment and lifestyle, that alter brain structure and function, caricatured by short-term memory loss, often with long-term retention (Hamdy, 2001). Because the orientation of dementia is not limited to cognitive failure (Sabat, 2001) but involves complex psychosocial processes (Kitwood, 1997) attachment theory was used to explore the interrelation strategies used by primary caregivers in a residential setting (Bowlby, 1986). The aim was to identify skills that achieved the most positive relationships and diffused challenging behaviour, with a view to extending these findings into the homecare setting.

Study Design
The nature and ethics involved in recruiting participants with dementia called for a multi-method approach to design and data collection, enabling full exploration of interrelation techniques (Curran & Wattis, 2004). This included participant observation, detailed interviews with care staff and meaningful conversations with family members.

Methodological Approach
The research was located within a private residential community over a 28 day timescale where 95% of residents suffered from dementia. Observational analysis included all residents, with more intense observations, and interviews with caregivers and relatives limited to four case studies. The first of which was Letty, a vivacious ninety-year old who loved attention and to hold hands. Doris was eighty-one, a widow of ten years who had found it hard to manage the challenges of dementia. Val was a ‘wanderer’ who in her sixties spent her days searching for her mum and finally, there was Maggie whose only communication was through nonverbal expression. Caregivers gave informal interviews focused on intervention skills and interrelation techniques. Attention was focused on strategies used in developing relations between the caregivers and residents, particularly their ability to diffuse challenging situations. Conversations with family members were genuine and informative. Relatives were shown a copy of the ‘Attachment Profile Questionnaire' (Hazan & Shaver, 1987) which describes three personality-types. Relatives were asked to select the narrative that best described their dependant prior to dementia, a marker from which to observe behaviour change.

Methodological Issues and Solutions
Thematic analyses and symbolic interaction were used in the interpretation of the documented observations and interviews. On-going recording avoided long delays between the event taking place, and documentation. This enabled greater accuracy where open conversation helped clarify the emotional frustration which often precipitates challenging behaviour.

Results: Key Findings
Immediately noticeable during participant observation, was the comradeship between the caregivers and residents. Staff rarely took breaks alone, preferring to eat with the residents who loved the personal attention. Challenging behaviour usually occurred when elders felt they were being ignored. Attachment-anxiety was at its most obvious, before and after meals which encouraged fretful behaviour. The serving of food seemed to heighten insecurity, with elders calling out for their loved ones. Evenings were particularly fraught; seeming to sense they belonged somewhere else, the elder grew increasingly distracted. Possessions became important at these times, elders would clutch their personal effects as a memory they could ‘hold on to’. Wandering also increased in the evening, with visitors gone, elders would become visibly upset, searching for their relatives and wailing. Abandoned and fearful, elders were observed wringing their hands, crying and adopting the foetal position. Interventions included music, singing and the strengthening of attachment through touch. The pre-lunch sessions of hand massage were most effective and fascinating to observe. Elders held their arms out gesturing the caregiver, eager for their turn and determined not to be missed. Supporting research by Lin, Y-S and Taylor (1998), massage was shown to reduce the usual mid-morning anxiety and confirmed a need for attachment.

Caregiver interviews were completed by week three. Main findings identified key issues of attachment, insecurity and abandonment, where most challenging behaviour occurred when elders were left on their own. Asked why these patterns were re-occurring and which interrelations were most successful, caregivers gave positive feedback on which skills worked best and why, emphasising the need to select interventions that suited both resident and caregiver. All believed that communication and attachment were the most important. Skills included, sitting with the elder, holding hands and reminiscence. All felt that ‘a good cup of tea and a hug’ was the best way to restore tranquillity, affirming to the elder they were loved and needed.

Conversations with family members focused on reflecting their elders’ lifestyle before dementia and how they had adapted to change once dementia set in. Most admitted that the hardest thing had been finding a way to relate with their loved one in a way they could understand and reciprocate (Romer, Gruder, Lizzadro, 1986). Overall family members felt that a perceived lack of support in the early stages of dementia may have contributed to their decision to accept residential care. Many felt that more guidance in the early days of the illness may have prolonged continuity of care in the home.

Contribution to an Ageing Agenda
Intervention skills developed by the caregivers incorporated, verbal and nonverbal communication, and interrelation through touch in the enhancement of quality of life for elders with dementia living in residential care. Challenging behaviour was a coping mechanism adopted by distressed elders who were overly-anxious and in need of attention. Developing interactive relations between the caregiver and elder with dementia, increased attachment, reduced insecurity and lessened feelings of abandonment ( Rogers, 1995). The interrelation strategies described in this report can be extended beyond the residential care home, where knowledge can be passed to family caregivers of elders suffering dementia, with positive implications on their future including the continuity of homecare.

Summary
The multi-method approach to data collection revealed six themes, security, abandonment, attachment, verbal and nonverbal communication, and interrelation through touch. With attachment the most prominent, analyses revealed that each case study had shown early signs of early dementia following the death of a loved one. Loss of companionship was the main trigger for abandonment-anxiety and security, exampled by irrational fear and agitated behaviour. The most successful interventions were verbal and nonverbal communication, and interrelation through touch. 

Future Directions
These skills are easily adaptable to other dementia settings including day-care and respite. With dementia set to increase dramatically (Mills & Coleman, 1999), developing relations that facilitate communication between caregivers and their dependants with dementia is imperative before demand exceeds supply (Miesen, 1999). Future projects include extending these strategies beyond the residential setting, toward the recognition, intervention and prevention of relationship breakdown, and continuity of dementia care in the home.

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