As Healthcare practitioners (HCP) we are often involved in caring for PLWD but not every HCP will be a specialist in this area and therefore may not have a deeper knowledge of the aspects of dementia which can put this cohort of patients at a higher risk of developing pressure ulcers. This clinical blog is designed to give you a greater understanding of these risks so you can be more proactive and knowledgeable, while undertaking a risk assessment, in preventing pressure ulcers from happening.
What is dementia?
Firstly, it is important to break down a few myths around what dementia really is and what it is not. Over the years many people mistakenly thinking that dementia is a problem with memory loss (which is a normal consequence of ageing) and whilst more severe memory loss may be part of the symptoms of dementia, it is not the only problem that these patients face. It is also not a mental health disorder. Dementia is a neurodegenerative condition that over time can affect memory, problem-solving, language and behaviour and affects each sufferer differently. Around 19 of the 20 PLWD will have one of four main types. Understanding the differences in the types of dementia can help in identifying what the risk factors might be alongside what symptoms they may suffer from and how this may affect their risk of developing pressure ulcers.
There are 4 main types of MASD which are:
- Alzheimer’s Disease – These changes are subtle to start and slow and progressive. Starts with some memory loss such as forgetting appointments, names, changes in mood and often the early symptoms are not recognised by those around them.
- Vascular Dementia – Second most common, and risk factors are similar to those for stroke and heart attack, so managing these risk factors can reduce the risk of developing this type of dementia. Early signs include problems with planning or organising, making decisions, or solving problems. This often takes a pattern of improving, deteriorating, plateau, and then decline again which can take weeks, months, or days.
- Dementia with Lewy Bodies – Underdiagnosed as symptoms are very different and include having difficulty staying focused, experiencing delusions and problems with movement, continence, postural drop, depression, anxiety and sleep whilst their memory may not be badly affected. It is closely related to Parkinson’s disease.
- Frontotemporal Dementia – more prevalent in younger people <65 and is one of the less common types of dementia. Often changes to personality and behaviours, for example, someone who was previously calm becomes agitated, someone who was previously kind may become very callous. (Alzheimer’s Society 2023)
How big is the problem of Dementia?
Globally, there are approximately 55 million PLWD, and this number is estimated to increase to 152 million by 2050 (WHO 2023). It is estimated there are 944,000 PLWD in the UK and 593,000 of these are living with advanced symptoms (Wittenberg et al, 2019). Almost 40% of people living with advanced dementia develop pressure ulcers before their death (Mitchell et al, 2009). People living with advanced dementia have a significantly higher prevalence of pressure ulcers, compared to people who have similar comorbid conditions but not dementia (Jaul et al, 2016).
Why is dementia a specific risk factor for pressure ulcers?
PLWD are more likely to experience the following problems:
- Risk of Falls –
- PLWD can have significant problems with mobility, balance, and muscle weakness which can increase their risk of falls.
- Can have difficulties processing what they see and reacting to situations causing sudden movements or over reactions to movement near to them increasing the risk of falling.
- May have difficult remembering directions or interoperating signs and directions so get easily confused and lost in unsafe areas.
- Pain –
- Pain control can be poorly managed in PLWD who also have multiple comorbidities.
- Pain control is often inadequate, especially in advanced dementia, creating difficulties with communication of the type and extent of pain experienced. This can lead to the manifestation of certain behaviours such as: agitation, distress, social withdrawal, and resistive behaviours which will impact on the patient’s ability to engage with preventative care (Sampson et al, 2010).
- Frailty –
- Frailty is defined as a state of high vulnerability to adverse health outcomes, including hospitalisations and death. Frailty and dementia have a complex relationship and a deterioration in one can make people more susceptible to the other (Fried et al, 2001. Song et al, 2022).
- Frailty and dementia share many risk factors and clinical features including age, inflammation, functional impairment and multi-morbidity (Kulmala et al, 2014).
- Sarcopenia (age-related, involuntary loss of muscle mass and strength) and frailty occur at the cellular level, and these can lead to physiological changes characterised by reduced muscle strength, weight loss and physical inactivity and can result in dependency, polypharmacy, disability, all of which will have an impact by increasing their risk of developing pressure ulcers (Jual et al 2018).
- Behavioural –
- Changes in behaviour, through disease progression, can manifest themselves in many forms and many HCPs report these behavioural changes make it increasingly difficult to manage the person living with dementia. These can range from disrupted sleep, changes to eating patterns, mood swings, sadness, frustration, being verbally or physically aggressive as well as many more (Appleton & Pereira, 2017). All of these behavioural changes will have an impact on a person’s mobility, nutrition, engagement with care, understanding of risk and HCP need to factor all these elements into their holistic assessments.
What can we do to reduce the risk of pressure ulcers for PLWD?
Communication: this will differ for each individual PLWD, so it is important to communicate in the right way for each person and always include their families and carers who know this person before the disease progresses. Communicate clearly and calmly using short simple sentences. Be patient and respect the person and understand that they may tire easily so short, regular conversational style interactions may be better. Avoid speaking sharply or raising your voice (Alzheimer’s Society 2023). Although written information on pressure ulcer prevention, for patient, families, and carers, is useful this should be supported with a verbal dialogue to ensure understanding and allow for questions to be answered.
Nutrition: It is clear from the research that PLWD are often admitted to hospital with the effects of malnutrition or dehydration (BDA 2018). Murphy et al, (2017) found 7 themes that assist with nutritional support of PLWD. Good nutritional intake will support tissue repair, tissue strength and improve the immune system to fight infections.
- Person centred Nutrition – understand each individual’s preference for food and drink, including any utensil adaption, quiet place if appropriate, adjustment to mealtimes, supervision and encouragement, culture and religion.
- Availability of food and drink – easily accessible throughout the day and should include food that a PLWD will recognise and enjoy. Encourage mini meals, snacking and plenty of fluid.
- Tools, resources, and environment – specialised plates and beakers if appropriate, visual aids for food selection, contrasting coloured crockery to enable food identification.
- Consistency of care – good communication and recognition of nutrition and hydration needs.
- Participation in activities – especially activities that stimulate appetite, baking, shopping, cake decoration.
- Provision of information – as discussed above.
Keep patients moving – All people at risk of pressure ulcers should be repositioned, unless otherwise contra-indicated, following an individualised schedule (EPUAP, 2019 https://www.epuap.org/ NICE, 2014 https://www.nice.org.uk/guidance/cg179 ). Mobility for PLWD will vary and fluctuate so individual care plans outlining the activities they can do independently or with assistance is important. We can support and encourage movement through visual clues, alarms, activity co-ordinators, reminiscence, and many other activities.
Even mobility itself can have risks for PLWD especially those who wander and move constantly. The risk of skin lacerations from trauma, the risk of blisters from shuffling feet, the risk of falls all need to be taken into account on a day-to-day basis.
Pressure relieving equipment – PLWD who are less mobile may need more specialised pressure relieving equipment, but it can be a challenge to decide which support service is the best. A comprehensive risk assessment alongside input from family and carers can help to ensure that the choice of surface is best suited to the person. For example: is an air mattress appropriate? PLWD may find the noise, lights, movement disorientating or uncomfortable and may struggle with the colour of the mattress or cushion. It may be more effective and calming to put in place a static mattress with an excellent immersive and enveloping foam surface, or a reactive hybrid surface, or foam and air (but no pump).
Managing incontinence – Although moisture associated skin damage (MASD) is not a direct cause of pressure ulcers it does contribute to the weakening of the skin and increased risk of localised friction, and shear to tissue (Young & Fletcher, 2019). Things to consider helping PLWD to remain continent as long as possible are:
- Are the signs for the toilet visible and is there a sign for the exit to allowing PLWD who may have short term memory loss and be unable to remember the way out of the toilet.
- Would contrasting colours of the toilet and walls help so it stands out?
- Are pull up pads better than side fitting ones as they are more like ordinary underwear?
- A urine bottle or commode beside the bed may reduce the risk of night-time falls.
- Continence assessment and monitoring fluid and food intake is very important as the disease progresses.
- Early signs of MASD should be reported and advice on management sought from senior nurse or Tissue Viability Specialist to avoid further deterioration and increasing the risk of tissue destruction and infection.
PLWD are at a higher risk of pressure ulcers compared to those without dementia due to the physiological, psycho-social, and social impact of the disease process. We need to create individualised care plans and comprehensive pressure ulcer risk assessments which consider the various elements of disease progression which will impact on the person’s ability to mobilise, take in good nutrition, maintain healthy skin integrity, maintain continence, and allow effective adapted communication. All care planning should involve family and carers, where possible, and be patient centre focused.
Watch OSKA Peers Under Pressure Clinical Webinar – Preventing pressure ulcers in people with dementia – what are the challenges?
Alzheimer’s Society (2023) Available at https://www.alzheimers.org.uk/ (Accessed 02/05.23)
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BDA (2008) Nutrition and Dementia, British Dietetics Association. Available at https://www.bda.uk.com/resource/nutrition-and-dementia.html (Accessed 02/05/23)
European Pressure Ulcer Advisory Panel guidelines on Pressure Ulcer Prevention and Management (2019) (www.epuap.org)
Fried, L.P., Tangen, C.M., Walston, J., et al, (2001) Frailty in older adults: evidence for a phenotype,
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Jaul, E., Meiron, O., Menczel, J. (2016) The effect of pressure ulcers on the survival in advanced dementia patients and co-morbidities. Journal of Experimental Aging Research. 42(4):382–389.
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Mitchell, S.L. (2015) Advanced Dementia. N Engl J Med. 372: 2533-2540
Murphy, J.L., Holmes, J., Brooks, C. (2017) Nutrition and dementia care: developing an evidence-based model for nutritional care in nursing homes, BMC Geriatrics, 17,(55) pp 1-14.
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Sampson, E.L. (2010) Palliative Care For People With Dementia, British Medical Bulletin, 96, pp 159-174.
Song, X. Low, H. Kelly, R, McDermid, R. (2022). Frailty and dementia in long-term care: An analysis of the InterRAI data over the past decade. Alzheimer’s & Dementia, https://alz-journals-onlinelibrary-wiley-com.ezproxy.brighton.ac.uk/journal/15525279 (Accessed 02/05/23)
Wittenberg, R., Hu, B., Barraza-Araiza, L., Rehill, A. (2019) Projections of older people living with dementia and costs of dementia care in the United Kingdom, 2019–2040 CPEC Working paper 5. Available at: http://www.lse.ac.uk/cpec/assets/documents/Working-paper-5-Wittenberg-et-al-dementia.pdf (Accessed 02/05/2023)
WHO (2023) Dementia. Available at https://www.who.int/news-room/fact-sheets/detail/dementia(Accessed 02/05.23) Young, C. and Fletcher, J. (2019) ‘Pressure ulcer education 2 : assessing patients risk of pressure ulcers. Nursing times, 115(11), pp.20-22.