Impact of Dementia on Quality of Life | Intervations
Dementia and Incontinence
An exploration of the impact that these conditions have on quality of life and a discussion of strategies that may be employed to manage the problem and/or enable the sufferer and carers to cope.
Based on the 2001 census, it is estimated that the total number of people living with dementia in the United Kingdom (UK) is 775,200 and that this figure will rise to 870,000 by the year 2010 and to 1.8 million by 2050 (Alzheimer’s Society 2004). Dementia affects about one person in 20 over the age of 65 years. This figure rises to one person in three for people over the age of 90 years (Gow and Gilhooly 2003). Studies have estimated that 18,000 people with dementia are under the age of 65, and that the number of people in the UK with dementia in minority ethnic communities could be as high as 14,000 (Alzheimer’s Society 2004).
Dementia is described as “a syndrome due to disease of the brain, usually of a chronic or progressive nature” (World Health Organization 2001). Dementia is associated with a range of symptoms including impaired memory, disorientation, poor concentration and difficulty in naming and use of language. Patients with dementia have an impaired ability to learn or recall learned information, difficulty in using motor skills and co-ordination, difficulty thinking in a clear and coherent way and in understanding or following a sequence (Jacques and Jackson 1999). The significant disabilities associated with
dementia can be accompanied by personality and mood changes, and changes in judgement. The term “dementia” is an umbrella term used to describe a number of conditions in which these symptoms occur, and where a differential diagnosis has been undertaken to rule out other causes for these symptoms (Cheston and Bender 1999). These include Alzheimer’s disease, vascular dementia and Lewy body dementia.
It is proposed that dementia commonly leads to incontinence of urine, faeces, or both. Urinary incontinence us up to four times more common in individuals with dementia than in people without dementia. Loss of continence may be more prevalent in Alzheimer’s disease than in vascular dementia, and becomes more common with increasing dementia severity (Skelly and Flint 1995). Men are more at risk than women, possibly because of associated prostatic problems. Faecal incontinence is less common than urinary incontinence, however both urinary and faecal incontinence are strongly associated with caregiver stress and possible premature entry to nursing and residential homes (Armstrong 1999). In fact, the rates of incontinence are particularly high among patients in hospitals, nursing homes and residential homes, where it is debated that approximately half might be affected (Irwin 2001).
This essay will briefly discuss the pathophysiology of the different types of dementia and incontinence with a view to investigating how these linked conditions affect quality of life. There will also be a discussion about various strategies that may be employed to manage the problem and/or enable the sufferer and carers to cope.
It is proposed that approximately 55 percent of patients diagnosed with dementia have Alzheimer’s disease, also known as Alzheimer’s dementia (Killeen 2000). It is a degenerative disease affecting the brain. This is a result of changes in the structure and function of two proteins, beta-amyloid and tau that cause the formation of plaques and neurofibrillary tangle form in areas of brain tissue, which destroy them (Burns et al 1997). The cause of this process is not yet fully understood. The temporal and parietal lobes of the brain are generally affected in Alzheimer’s disease, which can result in significant memory loss and an inability to recognise people and places. This can be extremely distressing, particularly if the person no longer recognises his or her image or that of friends and family (Kitwood 1997). As the condition progresses, basic skills and capabilities can be lost. Visual-spatial skills can become impaired, resulting in the patient becoming unable to put sequences of an activity or movement together (Jenkins 1998). The frontal lobe can also be affected and this can result in difficulties in communication and judgement resulting in disinhibited behaviour (Jacques and Jackson 1999). In Alzheimer’s disease the symptoms progress gradually but persistently over time (Burns et al 1997).
Vascular dementia, also referred to as multi-infarct dementia, is another common type of dementia. It is caused by problems in the circulation of blood to the brain, which results in multiple strokes to brain tissue resulting in significant cognitive impairment (Sander 2002). These strokes can cause damage to areas of the brain responsible for speech or language and can produce generalised symptoms of dementia. As a result, vascular dementia may appear similar to Alzheimer’s disease. Vascular dementia can progress in an irregular manner with episodes of sudden loss. It can also take the pattern of gradual change, as in Alzheimer’s disease. The rate of memory loss and impairment of insight appear to progress at a slower rate than in Alzheimer’s dementia. Vascular dementia has been identified as a distinct condition in up to 20 percent of people with dementia (Miller and Morris 1993); however, as with all types of dementia it can co-exist with other forms of the condition. Vascular dementia is considered the second most common form of dementia in the western world (Nor et al 2005).
Another common form of dementia is Lewy body dementia. Lewy body dementia is characterised by fluctuations of cognitive impairment, which are defined by episodic confusion and lucid intervals. These fluctuations in cognition can occur over minutes, hours or days. They can occur in as many as 50-70 percent of patients and are associated with shifting levels of attention and alertness (Archibald 2003). Patients with Lewy body dementia can experience visual and auditory hallucinations, secondary delusions and falls. These symptoms can result in the person presenting with behaviours that are challenging. Lewy bodies are tiny spots containing deposits of a protein called alpha-synuclein. These are found in the hippocampus, temporal lobe and neocortex in addition to the classic sites in the substantia nigra and other subcortical regions (Del Ser et al 2000). Lewy body dementia is ranked as the third major type of dementia. It is estimated that around 20 per cent of people with dementia will have the Lewy body form of the disease (McKeith et al 1995). However, this figure could be much higher, and it is estimated that up to 36 percent of people with dementia could have this type (Del Ser et al 2000).
It is posited that continence is a basic function that should be maintained in healthy elderly people, regardless of age. Loss of continence can be interpreted as a dysfunction of either the lower urinary tract or bowel, or of some other system that participates in the maintenance of continence, in particular the nervous system (Crome et al 2001). Loss of continence in the patient with dementia is related most commonly to alteration in basic factors necessary for its maintenance or to use of medication (Ouslander 2000). People with dementia are also more prone to suffer delirium which is associated often with incontinence. Immobility can soon lead to loss of continence and the frequency, and severity of incontinence is strongly associated with dementia severity and incapacity to walk or make transfers (Skelly and Flint 1995). Resnick (1995) analysed the relationship between incontinence and a series of factors outside the lower urinary tract. He found that if patients maintained independence to make transfers and to dress, even though their dementia was severe, they could maintain continence. The influence of sedative drugs, physical restrictions and other environmental or social factors must not be forgotten. Furthermore, the attitude of professionals, with over-use of absorbent or palliative products for incontinence, can itself lead to loss of continence.
Since the aetiology of incontinence in the older person with dementia may be multifactorial, it is suggested that a multidimensional assessment is required to identify the pathogenic mechanisms involved. The diagnostic assessment should be individualised, depending on the characteristics of each patient (clinical, functional, life expectancy) as well as the impact of incontinence (Khoury 2001). Generally, it is accepted that the basic assessment should include several components such as a medical history, clinical type of incontinence, the severity of incontinence, and the timing of leakages. A functional assessment focusing on mobility (transfers, walking, and skill grade) and mental function should be undertaken and a formal assessment should be made of the severity and nature of the cognitive impairment and of any depression or behavioural disorders that could influence presentation, as well as management of incontinence. Finally, an environmental assessment would prove useful to detect the existence of barriers that could limit access to the lavatory (Alzheimer’s Society 2004).
It is posited that incontinence has an adverse effect on the quality of life. Quality of life can be defined as the awareness of the capacity to meet personal, psychological and social needs on a daily basis. It is proposed that incontinence is very distressing and it can affect an individual’s sense of dignity and self-esteem especially if the person needs personal help from a carer or relative as a result of incontinence (DuBeau et al 2006).
Treatment of urinary incontinence is based on various approaches, which should be used in a complementary way to obtain the best results. It is fundamental to establish realistic therapeutic objectives. However, it is argued that it will not be easy to obtain positive results in all patients, because of immobility and lack of co-operation. Trying to reduce the severity of incontinence and maintenance of patient well-being, good perineal hygiene and “social continence” may be a more realistic goal. Thus, an individual approach is essential, adapted to the characteristics and situation of each patient (Irwin 2001).
It is proposed that treatment measures should include the identification and treatment of concurrent medical conditions, active management of constipation, hygienic-dietary recommendations (reduction of stimulant substances e.g. caffeinated drinks, modification of timing of fluid intake). An improvement in mobility, a review of usual treatment and change of drugs that are potentially involved in incontinence recommendations should be included in treatment measures. The type of clothes worn such as clothes with simple opening and closing systems can help with toileting and incontinence. Utilising environmental interventions such as; enhanced visibility by painting toilet doors bright colours, signposting and good lighting, ensuring easy access to toilets, providing grab-rails and raised toilet seats, and ready availability of mobility aids, commodes and urinals, preferably with nonspill adapters, will be of immense help. Debatably, these measures might assist the dementia patient with any possible confusion as to where the toilet is (Alzheimer’s Society, 2004).
Other strategies for the management of incontinence in the dementia sufferer could include behavioural techniques. These techniques attempt to promote a change in the patient’s (or caregiver’s) behaviour, trying to re-establish a normal pattern of bladder-emptying or to prevent the patient from being wet. Simple, non-invasive, behavioural techniques are relevant for almost all types of patients and incontinence, and can be used jointly with other therapeutic options, especially drug treatment (Khoury 2001). Two groups of techniques are differentiated: those performed by the patient (pelvic floor exercises, bladder-retraining, biofeedback) and those by the caregiver (micturitiontraining, scheduled voiding, prompted voiding). It is argued however, that the patient-dependent techniques require previous instruction as well as understanding and collaboration by the patient, so they may be impracticable for people with advanced dementia.
The most used behavioural techniques are prompted voiding, micturition training and scheduled voiding. Prompted voiding has the greatest scientific support. The objective of this technique is to stimulate the patient to be continent through periodic assessments by the caregivers and positive reward systems. Several studies demonstrate the effectiveness of behavioural techniques in institutionalised elderly subjects with dementia, especially in reduction of incontinence episodes. However, most data report its effectiveness only in the short term (Eustice et al 2002, Durrant and Snape 2003).
Dementia is a distressing long-term condition that affects both sufferers and their carer’s quality of life. Coupled with that incontinence can be humiliating for the individual with dementia and upsetting for their significant others around them. It is important to assess the person’s individual needs as incontinence in dementia is multifactorial. There are various strategies and treatments that can be put into place that will assist both the sufferer and their carer. Behavioural techniques such as prompted voiding, micturition training and scheduled voiding have been found useful as a treatment alongside environmental and current review of medical history. It is important to note that incontinence should always be viewed as associated with, rather than caused by dementia and therefore potentially treatable.
References
Alzheimer’s Society (2004) Policy Positions: Demography, www.alzheimers.org.uk/News_and_Campaigns/Policy_Watch/demography.htm, (Last accessed: August 2006)
Archibald C (2003) People with Dementia in Acute Hospital Settings: A Practice Guide for Registered Nurses, Stirling, The Dementia Services Development Centre
Armstrong M (1999) Factors affecting the decision to place a relative with dementia into residential care, Nursing Standard, 14, 16, 33-37
Burns A, Howard R, Pettit W (1997) Alzheimer’s disease: A Medical Companion, Oxford, Blackwell Science
Cheston R, Bender M (1999) Understanding Dementia: The Man with the Worried Eyes, London, Jessica Kingsley
Crome P, Smith AE, Withnell A (2001) Urinary and faecal incontinence: prevalence and health status, Reviews in Clinical Gerontology, 11, 109-113
Del Ser T, McKeith I, Anand R, Cicin-Sain A, Ferrara R, Spiegel R (2000) Dementia with Lewy bodies: findings from an international multicentre study, International Journal of Geriatric Psychiatry, 15, 11, 1034-1045
Durrant J, Snape J (2003) Urinary incontinence in nursing home for older people, Age Ageing, 32, 12-18
Eustice S, Roe B, Paterson J (2002) Prompted voiding for the management of urinary incontinence in adults, Cochrane Database Systemic Review
Gow J, Gilhooly M (2003) Risk Factors for Dementia and Cognitive Failure in Old Age, NHS Health Scotland, Glasgow
Irwin B (2001) Management of urinary incontinence in a UK trust, Nursing Standard, 16, 13, 15, 33-37
Jacques A, Jackson G (1999) Understanding Dementia, (3e) Churchill Livingstone, Edinburgh
Jenkins DAL (1998) Bathing People with Dementia: The Bathroom and Beyond, Stirling, The Dementia Services Development Centre
Khoury JM (2001) Urinary incontinence: No need to be wet and upset, North Carolina Medical Journal, 62, 74-77
Killeen J (2000) Planning Signposts for Dementia Care Services, Edinburgh, Alzheimer Scotland
Kitwood T (1997) Dementia Reconsidered: The Person Comes First, Milton Keynes, Open University Press
McKeith IG, Galasko D, Wilcock GK, Byrne EJ (1995) Lewy body dementia: diagnosis and treatment, British Journal of Psychiatry, 167, 6, 709-717
Miller E, Morris R (1993) The Psychology of Dementia, Chichester, John Wiley and Sons
Nor K, McIntosh IB, Jackson GA (2005) Vascular Dementia: Series for Clinicians, Stirling, The Dementia Services Development Centre
Ouslander J (2000) Intractable incontinence in the elderly, British Journal of Urology International, 85, 3, 72-78
Resnick NM (1995) Urinary incontinence, Lancet, 346, 94-100
Sander R (2002) Standing and moving: helping people with vascular dementia, Nursing Older People, 14, 1, 20-26
Skelly J, Flint AJ (1995) Urinary incontinence associated with dementia, Journal of the American Geriatrics Society, 43, 286-94
World Health Organization (2001) Alzheimer’s disease: The Brain Killer, Geneva, WHO