Keady and Nolan (1995) present a model of coping in dementia that proposes nine stages: slipping, suspecting, covering-up, revealing, confirming, maximising, disorganisation, decline and death. The person with dementia notices that she is having difficulties, but as an active agent she initially attempts to cover up slips from other people. Gradually she either decides or is forced to share her concerns with others, including professionals who confirm the problem by reaching a diagnosis.
Acknowledging her difficulties, she attempts to maximise her abilities using a variety of coping strategies. However, increasing neuropathology and social adversity eventually lead to disorganisation, decline and death.
Dementia is thus experienced as loss, which triggers a process of grieving, often conceptualised as occurring in stages of concern, denial, anger, depression, acceptance and reconstruction. Cognitive deficits may interfere with the person’s ability to progress through the stages of grieving. According to Solomon and Szwarbo (1992) the person with dementia may be unable to move to the final stages and may get stuck in the stage of disorganisation. Stage models can be useful conceptual tools. However, a common criticism of such models is that not everyone will necessarily proceed through the stages in a fixed order. Stage models ignore the personal histories and values of people with dementia and therefore do not acknowledge that individuals with dementia will be experiencing their losses in different ways.
1.6.2. The Adaptation Coping Model
□roes (1997) presented a model for adaptive coping with dementia based on the crisis model of Moos (1984) and the coping theory of Lazarus and Folkman (1984). In this model, personal, illness related, material and social factors influence cognitive appraisal (the meaning a person ascribes to cognitive impairment). It provides a framework for interventions for challenging behaviour, which are partly explained as inadequate ways of coping with stress caused by difficulties with a number of adaptive tasks in relation to dementia. These include: dealing with disability; preserving an emotional balance; maintaining a positive self-image; preparing for an uncertain future; and developing and maintaining social relationships. With regard to nursing homes additional adaptive tasks include dealing with the nursing home environment and treatment procedures, and
developing an adequate relationship with professional staff. The demands of these adaptive tasks will evoke stress and emotional responses, such as anxiety, grief, shame and anger.
The person strives to maintain a balance between the demands of the adaptive tasks and her existing resources. Effective coping maintains or restores the balance. Ineffective coping with the stress generated by a particular adaptive task will precipitate a crisis. In crisis, the person is off balance and no longer in control of her situation. This can be recognised by the relatively sudden occurrence of behavioural symptoms, as well as depression, acute anxiety, panic attacks and physiological disorders. Inadequate coping may lead to an unstable balance. This is characterised by regular, temporary behavioural problems, which when observed over a period of time can be linked to specific situations that require particular adaptive tasks. This unstable balance threatens to collapse into a downward spiral of psychosocial problems (e.g. chronic behavioural and communication problems, and isolation).
The model has been used to formulate behavioural problems as a ‘psychosocial diagnosis’ that identifies which of these adaptive tasks the person with dementia has difficulty with. This guides an intervention based on reactivation, resocialisation and improving affective functioning. The ‘psychosocial diagnosis’ will also identify the support needs of the carer in terms of information, practical help, emotional support and increasing their social network. Droes, Meiland, de Lange, Vernooij-Dassen and van Tilburg (2001) reported that an intervention based on the model significantly decreased problematic behaviour, in particular inactivity and unsocial behaviour. In a seven-month period, behavioural problems led to admission to residential care in 30% of the control group compared with 8% of the intervention group. This difference was attributed to higher levels of self-reported competence in the carers that participated in the intervention.
A particular strength of the model is the idea of the person striving to maintain equilibrium and the recognition that adaptive coping tasks can also be a problem for the carer. The model is however limited by its focus on challenging behaviour, which may be less evident in the early stages of cognitive impairment.
1.6.3. An interpersonal model
A review of the coping literature on dementia shows that much of the research has focused on coping in caregivers, although a small body of work has started to address coping in the person with dementia. Little attention as yet has been given to the inter-relationship between the two, although some models of coping with chronic illness (e.g. Maes et al., 1996) make this relationship explicit. In their presentation of a framework for stress and coping in the families of Alzheimer’s patients, DeLongis and O'Brien (1990) focused mainly on the carer’s perspective. However, it is possible to consider aspects of their model from the perspective of the person with dementia.
DeLongis and O’Brien extended the Lazarus and Folkman cognitive model of stress and coping by pointing to a role for interpersonal factors in determining a number of aspects of coping in ageing families. Their discussion of the influence of social relationships on coping is equally valid for the person with dementia and the carer. Through the use of social referencing, people turn to others for a sense of what is considered appropriate coping in a given situation. The modelling of effective coping may be one reason why support groups are helpful.
The notion of relationship-focused coping (a form of coping directed at maintaining and regulating social relationships) is presented alongside emotion- and problem- focused coping, mainly with the carer in mind. It is suggested that empathie coping is one mode of relationship-focused coping that could enhance the well-being of
later-life families faced with the task of caring for a chronically ill family member. In empathie coping, the carer attempts to perceive accurately the affective world of the dementia sufferer and tries to communicate accurately and sensitively their understanding of this. The following quote originally described the challenge for the carer, yet it may also more poignantly describe the difficulties faced by the person with dementia in coping:
“Successful coping may depend not only on our ability to keep our emotions under control and our ability to resolve problems, but also on our ability to regulate our relationships with involved others” {DeLongis & O’Brien, 1990, p.229).
This interpersonal model of coping in carers therefore highlights the importance of affiliation as an important coping strategy for dealing with adversity, and this may be a particularly difficult strategy for a person with dementia to employ. Much will depend on the shared history of the person with Alzheimer’s disease and their relative (Coyne & Fiske, 1992).