Over 850,000 people in the United Kingdom (UK) are living with a suspected diagnosis of dementia (Alzheimer’s Society, 2014), whilst worldwide this is estimated at 44 million (Alzheimer’s Disease International, 2014). Dementia is in fact an umbrella term that is used to describe a group of progressive neuro-cognitive disorders characterised by a global cognitive impairment that represents a decline from previous levels of pre-morbid functioning and leads to an eventual terminal illness. There are over 200 different conditions (sometimes known as dementia sub-types) that may lead to dementia (Ashton, 2016; Stephan and Brayne, 2010) although the most common sub-types seen in the UK are:
•Alzheimer’s disease (Major or Mild Neurocognitive Disorder due to Alzheimer’s Disease1)
•Vascular Dementia (Major or Mild Vascular Neurocognitive Disorder1)
•Dementia with Lewy Bodies (Major or Mild Neurocognitive Disorder with Lewy Bodies1)
•Frontotemporal degeneration (Major or Mild Frontotemporal Neurocognitive Disorder1)
1 importantly DSM-5 (APA, 2013) notes that although the term dementia is used for degenerative disorders that affect older adults, the term neurocognitive disorder is widely being used
The symptoms of dementia are sometimes characterised as ‘cognitive’ and ‘non-cognitive’ (see Table 1), although presentation will vary depending on both type of dementia and stage or progression of the condition.
Table 1: Some symptoms of dementia
Cognitive Symptoms Non-Cognitive Symptoms
Short term memory loss
Episodic memory loss
Semantic memory loss
Visuospatial memory loss
Working memory loss
Language difficulties and other associated communication problems
Sequencing difficulties Behavioural
Increased risk of infection
Visuo-spatial difficulties (i.e. depth perception)
Dementia is not an inevitable part of ageing and any concerns about a person’s cognitive deficits or unexplained behavioural and psychological symptoms, regardless of age, ought to be brought to the attention of the General Practitioner (GP). There are numerous conditions that mimic many of the symptoms dementia (known as differential diagnosis) but may in fact be treatable (i.e. delirium states, depression, hypothyroidism, vitamin deficiencies, metabolic disorders) and these need to be carefully assessed for and treated, or ruled out before a diagnosis of dementia is made. Clinical assessments would then normally include history taking, physical examination, mental state examination, cognitive testing, blood tests, and structural or functional brain imaging.
An increasing number of informal carers, usually close first relatives such as a spouse/partner or son/daughter, take on the role of carer. Recent figures suggest approximately 6.5 million people currently in the UK see themselves as carers for someone with a diagnosis of dementia (Carers UK, 2017). The role of informal carers, family, and friends supporting the person living with a diagnosis can never be understated. They often have to make many decisions to support their relative/friend whilst also juggling other family commitments. To make the best decisions possible, carers need to have a wider range of information about the condition, disease progression, appropriate advice on management and treatment options, financial support including benefit entitlements, legal issues such as power of attorney, mental capacity, employment rights, carers rights, driving queries for the person with the diagnosis, as well as other systems of social and psychological support available to both parties. However, it is often the practicalities of living with symptoms that cause the greatest day to day distress.
Supporting carers with symptom management – continence
One example of symptom management options that ought to be discussed with carers and people with a diagnosis is continence. Symptoms of incontinence are common in people with dementia due to deteriorating mental and physical abilities (Wai et al, 2010) and can be a significant cause of distress to carers. Poorly managed continence problems could also lead to untimely care home admissions. Continence problems for people with dementia may include:
• Memory problems with forgetting to go to the toilet
• Executive problems in not knowing how to use the toilet or adjusting clothing
• Communication problems in articulating need
• Difficulties in recognising the toilet
It is important to note that continence problems may not be related to the person’s dementia. Rather a host of other conditions may be attributed to the cause, including infection, enlarged prostrate, constipation, etc. A carefully considered continence assessment is therefore always essential and ideally referral to a continence nurse.
Following continence assessment, a range of strategies to promote continence may be considered, such as:
• Environmental design/modification of the toilet area
• Visual signs and clear identification of the toilet area
• Accessible clothing for the user
• Cover or remove mirrors (particularly where prosopagnosia is noted)
On some occasions a continence pad may be considered the best option. The best style of continence pad however for the individual with dementia needs careful consideration. In a recent funded study by Essity (Knifton et al. 2018) the qualities of a continence pad for use with people with mild to major dementia were considered:
• Supports skin integrity (Trowbridge et al, 2016)
• Good fit and comfort and easily disposed of (Simpson, 2000)
• Discreetness and odour control (Chartier-Kastler et al, 2011)
• Absorbency (Clarke-O’Neil et al, 2004)
• Storage, ease of application and removal of pad (Fader et al, 2003)
• Can be used with other products such as barrier creams (Vinson and Proch, 1998)
This was used to inform a small study of continence products with people with dementia in care homes. Carers who responded (n=72) indicated that pull-up pant style products were useful for people with mild dementia as they promoted a greater sense of independence and were viewed as discreet. Conversely this type of pad was seen as unsuitable for people with more advanced dementia. Continence products are likely to need to be changed more often and pull up style products may increase distress for the person with dementia and prove more labour intensive for the carer. The use of a wrap-around continence product in this situation was considered more appropriate.
Financial consideration often limits the range of continence products available for use with individuals, however from both a financial (staff time) and patient centred perspective having the appropriate continence product available for people with dementia is essential.
Alzheimer’s Society (2014) Dementia UK: Update. Second Edition. Alzheimer’s Society.
Alzheimer’s Disease International (2014) World Alzheimer Report 2014: Dementia and Risk Reduction. www.alz.co.uk/research/world-report-2014
American Psychiatric Association (APA) (2013) Diagnostic and Statistical Manual of Mental Disorders. Fifth Edition. DSM-5. Washington, DC, London: American Psychiatric Association
Ashton, S (2016) Dementia Awareness. In, Smith, G (ed), Dementia care. A practical approach. Boca Raton, London, New York: CRC Press
Carers UK (2017) Why We’re Here. www.carersuk.org/about-us/why-we-re-here
Chartier-Kastler E et al (2011) Randomized cross over study evaluating patient preference and the impact on quality of life of urisheaths vs absorbent products in incontinent men. British Journal of Urology International, 108 (2): 241-247
Clarke-O’Neil S et al (2004) A multicentre comparative evaluation: disposable pads for women with light incontinence. Journal of Wound, ostomy and Continence Nursing, 31(1): 32-42
Fader M et al (2003) Management of night-time urinary incontinence in residential settings for older people: An investigation into the effects of different pad changing regimes on skin health. Journal of Clinical Nursing, 12(3): 374-386
Knifton C et al (2018) An exploration of the experience of using the TENA Pants product compared to the usual continence products as perceived by carers of people with dementia in care homes. Nursing Times Vol 114 Issue 5: 31-32
Simpson, L (2000) Management of urinary continence in older men. Elderly Care, 12(2): 36
Stephan B and Brayne C (2010) Prevalence and Projections in Dementia. In, Downs N and Bowers B (eds) Excellence in dementia care. Research into practice. Berkshire: Open university Press
Trowbridge MM et al (2016) A randomized controlled trial comparing skin health effects and comfort of two adult incontinence protective underwear. Skin Research and Technology, 23(2): 202-211
Vinson J and Proch J (2010) Inhibition of moisture penetration to the skin by a novel incontinence barrier product. Journal of Wound, Ostomy and Continence Nursing, 25(%): 256-260
Wai APP et al (2010) Implementation of context-aware distributed sensor network system for managing incontinence in patients with dementia. International Conference on Body Sensor networks. Singapore.