There is a need for all levels of staff in community, residential and acute care services to have a better understanding of dementia. With reference to the current literature, critically discuss what specifically your staff need to know about dementia, and why, in order to improve the quality of care provision in your organisation or service.
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Estimates of the prevalence of dementia may vary, but we know that the coming years will bring a growing number of people with dementia, as well as a sizeable group of people with some level of cognitive loss without fitting the actual diagnosis of dementia (Cheston & Bender, 2003). Yet despite an ever increasing need for improved diagnosis and management of people of dementia, a recent Canadian study reported that even family physicians fail to recognise one-quarter to two-thirds of Alzheimer’s disease and related dementias in their patients (Lee et al, 2010). This is despite the doctors being ideally placed to assess, support and manage these people with whom they already had established relationships (Lee et al, 2010). If this study shows how physicians lack the understanding or confidence in diagnosing and managing dementia-related symptoms, what about the level of knowledge, skill or experience of the broad range of other staff in community, residential and acute care services?
Before and after diagnosis, the person with dementia and their families, representatives and/or carers may engage with staff in community, residential and/or acute care settings. They may interact with paid workers, volunteers or contractors -individuals or members of organisations – ranging from administrative officers to direct care workers, health care professionals, specialists and other service providers. These people’s direct or indirect responsibilities may include assessing the person’s cognitive and physical capacity, providing hands-on personal care, recommending services, making referrals, developing care plans, identifying and accessing funding, arranging social and recreational activities, cleaning, cooking and maintenance services. This interdisciplinary team – each with their own priorities, strengths and challenges – must collaborate together to provide appropriate care and support for the person with dementia. This cannot happen successfully if they do not all share at least a general understanding of dementia and a commitment to improving the quality of care in the organisation or service, coupled with an appreciation that dementia is not a ‘normal’ part of the ageing process (Woods, 2005).
While the term ‘dementia’ covers a range of symptoms and diagnoses, people working in the community, residential and acute sector should be able to identify at least the most common signs of dementia. These signs will vary between individuals, but generally include memory loss, forgetfulness, confusion about time and place, difficulty performing familiar tasks, neglecting personal hygiene or nutrition , behaving inappropriately or without inhibition, anger or distress (often caused by frustration), or wandering (Woods, 2005). Staff – particularly those directly involved with diagnosis and treatment – should also understand the different types of dementia, stages and rates of progression, taking into account the common risk factors for dementia, including the person’s age, a family history of dementia, a history of depression and lower education or occupational status (Cheston & Bender, 2003).
The individual personality, life history and other personal circumstances of the person with dementia also add to the complexity of the situation, and may include needs or preferences around gender, cultural background, language or geographical location (such as people in rural or remote areas) (Fossey, 2005). And, while the person with dementia and their loved ones will often be experiencing feelings of grief, fear or loss, they are attempting to establish and maintain constructive relationships in an environment constrained by limited resources, both in terms of funding and qualified, committed staff. The situation is further exacerbated by negative stereotypes around older people and those with dementia, sometimes extending to ageism (Cheston & Bender, 2003).
Within this challenging context, contemporary gerontology is focussing on turning the philosophy of ‘person-centred care’ into daily practice (McCormack, 2005).
The basic principles of person-centred care include acknowledging and valuing the individual and their loved ones, understanding the person’s subjective world when planning and providing care, and providing a positive social environment for the person (Fossey, 2005). As such, quality care considers the needs of the person with dementia, their carers and members of their care team (Willick et al, 2007). In the residential aged care environment, the carer cannot provide person-centred care without a sound understanding of dementia, including the ability to identify or respond to ‘typical’ cognitive changes as well as non-cognitive features such as depression, hallucinations, delirium, delusions and challenging behaviours, often described as ‘behavioural and psychological symptoms of dementia’ (Woods, 2005). Indeed, in her review of care homes, Fossey emphasises the importance of relationships with care staff in maintaining the resident’s wellbeing (2005). This understanding of dementia and the individual’s progression of the illness provides a foundation for effective, positive communication, and the provision of appropriate care, where greater attentiveness and skills such as active listening and observation, and the use of gestures, pictures or personal objects to support communication, further enable a successful relationship with the person with dementia (Fossey, 2005).
In conducting assessments and compiling person-centred care plans, information should be sought from the individual person, their close family and/or friends, and other health care professionals. These different perspectives of the person’s physical and cognitive health should be combined to generate an appropriate, useful program to best meet the person’s individual needs (Arlt et al, 2007). Wherever possible, the person with dementia should be encouraged to actively participate in identifying, selecting and engaging appropriate care and support services … to ‘cope and to manage their illness in as useful a way as they possibly can’ (Cheston & Bender, 2003: 147).
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Studies show that even with mild to moderate dementia or cognitive impairment, the individual person can contribute to discussions and decisions relating to their quality of life (Arlt et al, 2007). At this point, it is interesting to note that people with mild to moderate dementia often rate their health related quality of life higher than their family (Arlt et al, 2007).
Communicating successfully at the most appropriate level and by the most appropriate means supports care givers to form a relationship with the person with dementia, which contributes to preventing depression, relieving loneliness and improving their general quality of life (Hendryx-Bedalov, 2000). This relationship also provides a framework in which the person can be helped to express their basic needs and desires, for example through close-ended questions which require a ‘yes’ or ‘no’ response. As expressive and receptive language – sending and receiving messages – deteriorates with the progression of dementia, care givers must have a sound understanding of the effects of dementia and use the most effective communication strategies for each individual (Hendryx-Bedalov, 2000). This two-way process of verbal and non-verbal cues and messages enables relationships to be established between the person with dementia and the care giver. Of course, this goal can only be achieved when services are organised in a way that supports their participation (Cheston & Bender, 2003). For those who are unable to communicate directly with service providers or carers, structured observation methods, such as Dementia Care Mapping, can be used to determine how best to meet their needs (Woods, 2005). This knowledge empowers the care giver to provide quality care, identify risks and behaviour triggers, respond to signs of pain or abuse, and tailor their interventions to the individual person. Indeed, understanding dementia and its variations, and the personal history of the person with dementia, will enable the care giver to contribute to the person’s quality and enjoyment of life, while – hopefully – making their job a bit easier and more worthwhile (Fossey, 2005).
However, improving the quality of care in any organisation should also include a review of the physical environment…not just the people working in it. For example, when any patient enters a hospital environment, they find themselves in a strange place, often dimly lit, without their personal effects or a familiar routine; they experience disorienting procedures and complicated equipment, often exacerbated by non-communicative roommates or staff (Merck & Co, 2004). If the patient has dementia, the challenges increase significantly for the individual and staff. Conditions in hospitals, for instance, often increase the risk of falls, and incontinence in acute care services is often due to confusion in the environment, rather than physiological conditions (Merck & Co, 2004).
Given their challenges with memory, the person with dementia needs a calm, caring environment where they can make the most of their abilities (Cheston & Bender, 2003). By providing environments that foster enablement, rather than disablement, care should be taken that the service is not arranged for the convenience of the organisation or staff (Willick et al, 2007). While many aged care services are already committed to providing supportive environments and espouse positive philosophies of care, some hospitals are now also developing strategies to help older people to maintain their level of cognitive and physical function. These efforts include using multidisciplinary teams of health professionals to evaluate, address and monitor the person’s needs and care (Merck & Co, 2004).
With quality and continuity of care depending on a shared understanding of dementia, it is important to note that successful communication and positive relationships with the person with dementia also benefit the care giver and support their overall experience of care giving (Cheston & Bender, 2003). In a time of unprecedented demand for aged care services, it is essential for all levels of staff in community, residential and acute care services to be educated and mentored in a way that supports them to recognise at least the common elements associated with the different types of dementia (Bowers, 2008).
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