There are many aspects of our personal care and hygiene routines that we might claim to perform ‘without thinking’. In truth, this is not the case and there is much thinking, planning and coordinating that is required to complete even the most basic personal care tasks. Dementia can impact the ability to recognise when particular personal hygiene routines are required, how to plan and coordinate them effectively, and how to ensure and check that someone feels that they are presenting themselves as they would like.
We each have our own routines, schedules and habits when it comes to personal hygiene preferences. The order in which routines are followed, the speed at which they are completed and the attention to detail along the way will be different for everyone. A diagnosis of dementia may mean that someone needs help with some aspects of personal care that they have previously managed privately and independently. Some changes to personal care and hygiene routines may be actively chosen to make day-to-day routines less demanding and easier to manage. Other changes may occur because someone has lost interest in some of the personal hygiene habits they previously had, because they are less aware of their need or because they have developed new habits or preferences since their diagnosis. For example:
- a preference for a particular colour
- the decision to go for easy-to-fasten styles of clothing
- an increased sensitivity to feeling cold
- an aversion to the sensation of hot water from a shower
Apathy, low mood, depression or anxiety can all impact the way we feel about our personal hygiene, clothes, style and look. A lack of insight may reduce the ability to recognise the need to pay attention to these things. Difficulties with coordination, visuospatial awareness, and fine motor skills can mean that these activities take longer than usual and are more tiring and frustrating.
Personal care and hygiene is typically a private affair. Having to seek support or assistance in basic hygiene activities can feel embarrassing and even humiliating. Feeling embarrassed can mean we rush activities to get them done as quickly as possible. Rushing and hurrying is not so easy when someone is living with dementia, so we need to look for ways to maximise privacy, maintain dignity, and allow ourselves the time we need to manage personal hygiene activities as independently as possible. Feeling embarrassed or humiliated creates anxiety, pressure and additional stress– all of which further hinder abilities to maximise independent activities. Embarrassment and humiliation are difficult emotions to live with and can lead people to behave in ways that are reactive and out of character. They may cause someone to act in angry or aggressive ways.These behaviours are understandable but can be difficult for everyone concerned (see RDS website page on adapting emotionally for further support). This short webinar, although focused on people living with a PPA diagnosis, provides information about managing resistance to hygiene needs that is applicable across other diagnoses.
There may be personal, cultural or faith traditions which affect why someone feels uncomfortable having other people assist them in their personal hygiene activities. They may have experienced abuse, embarrassment or have other aspects from their past that impact the way they prefer to manage their personal care now. The gender of the person who is providing assistance can matter significantly to some people.
Changes in self-care and hygeine habits and routines can cause frustration and confusion for the person living with dementia and for the people around them, especially if we don’t fully understand the reasons for these changes or are frustrated by them. It can feel difficult to ask for, accept or provide help with activities that have previously been personal and private.
Having some ideas of alternative ways to manage hygiene and personal care, and understanding why some of the changes might occur, can help everyone work as well together as possible, to support these personal and private activities in ways that are as helpful as possible. The information on this page describes some ways which people living with rare dementia diagnoses can be supported with hygiene and personal care needs.
General tips, strategies and adaptations for personal hygiene
Some of the suggestions below will work better for some people than for others. Be prepared to persevere for a while before acknowledging that something isn’t working and moving on to try something else. Try not to feel despondent if there isn’t an immediate solution. What doesn’t work today, might be helpful tomorrow.
- Try to minimise distractions.
- Factor in extra time for activities which may take longer than they previously did.
- Ensuring the room temperature is warm enough to make personal hygiene activities comfortable will help reduce the temptation to rush these activities.
- Make sure there is good lighting and enough space.
- Try to provide privacy in as many ways as are safe and possible, closing curtains or doors and offering support from a distance where appropriate and possible. Holding up a towel as a semi-screen between us can provide a sense of privacy even when we are assisting or receiving help with personal care needs.
- Think about what really matters. How often is a bath or shower needed? Are they being taken for pleasure, purpose– or out of habit? Can a strip wash take its place on some days? How often do clothes really need to be changed? Does it matter if clothing combinations are worn for more days than previously, or in new and less conventional ways? Try to let go of things that are less important and ‘choose your battles’.
- Feeling unsafe in an environment leads to reluctance to engage in activities in it. Assess the environments in which personal hygiene routines are being carried out. Maybe having a stool beside the sink in the bathroom, or a sturdy table for equipment to be laid out on will help.
- Set reminders to help prompt personal hygiene activities. Use visual prompts around the home to help remind about the necessary steps that are required to complete an activity. These might be diagrams positioned beside the mirror in the bathroom, or by the wardrobe in the bedroom.
- If a particular activity is not going well, leave it for a while and return to it later.
- Be ready to take impromptu opportunities as they arise. It doesn’t matter if it’s not the usual time for a particular activity – if the moment is good – take it!
- Music can be a good way to relieve anxiety or pressure during activities.
- Try using a different room for various personal care activities. For example, it might be easier to have a wash, or brush teeth, using a bowl of water whilst sitting in a comfortable chair in the living room, as opposed to in the bathroom with all its noises and distractions.
- ‘Doing it together’: role model the activity being required. Seeing someone else performing a particular activity can provide the cues that are required to initiate it in someone else.
- Have essential items laid out in advance and available for access and use.
Dressing
The process of getting dressed is complex. It is a combination of several tasks, each of which can present their own challenges depending on the type of dementia someone has.
Choosing what to wear in accordance with the weather or likely activities of the day, selecting appropriate clothes from wardrobes and drawers and putting them on in the way they are intended to be worn, all hold extra levels of complexity when the brain is not sending, receiving and interpreting the messages it should.
Allowing more time to get dressed, being kinder to ourselves and others about ‘mistakes’, and being prepared to let go of some of the attention to detail are likely to be helpful. There are various other ways to simplify the process and minimise some of the challenges involved in getting dressed (please see the RDS website page on vision for more information on visual changes and dressing).
Examples of ways that dressing can be impacted in people living with dementia
“Mum always seemed to end up wearing multiple layers of clothes. At first, we thought it was because she felt the cold more acutely, but even in the heatwave of the summer, she was wrapped up in extra jumpers and cardigans. It turned out she just didn’t realise just how many layers she was wearing.”
“I am able to get myself dressed but I need to allow a lot longer to do it. My partner lays out the clothes I am going to put on, on the bed, clearly separated and sort of in the order I need to put them on.”
“I get my daughter to hang my clothes up in the wardrobe as coordinated outfits. I know that the hanger will be holding a skirt, blouse and jumper that match, and she even puts a pair of knickers and tights on the hanger too – so I don’t need to fiddle around in the drawer…it’s so helpful.”
People living with dementia can have difficulties with dressing due to:
- changes in awareness of when or how to get dressed
- becoming less able to anticipate clothing needs
- changes in balance and spatial awareness which can affect how we co-ordinate getting clothes out of wardrobes and drawers as well as how we put clothes on
- changes in vision which may affect our ability to recognise what we see
- changes in co-ordination and fine motor skills which can make fastening buttons and zips difficult, fastening bras a challenge, and navigating armholes and leg holes more difficult to co-ordinate
- mood and behavioural changes which can lead to a range of additional challenges, including anxiety and additional worrying about dressing, apathy and a lack of awareness or interest in the activity and in some cases inappropriate dressing choices
- depression or anxiety can make us feel less inclined to engage with our usual routines, as can other symptoms such as apathy or mood changes
- some medications which can have side effects which cause us to be less likely to engage in our usual routines
Tips, strategies and adaptations for dressing
- Large, bold coloured tags can be sewn into the back of most items of clothing to help differentiate the back from the front of an item. Alternatively, place the tag on a sleeve, or other part of the clothing, if this provides a more helpful means of identification. AttachATag option may also be helpful.
- Avoid complicated button fasteners and look instead for clothes which are easy to put on and take off. There are lots of websites that offer a range of adaptive clothing, and which can provide ideas for dressing alternatives (see the additional resources section at the end of the page for website links).
- Scarves can be adapted in a stylish yet functional way to protect clothes from spills at mealtimes. Some websites sell these fitted with clipper fasteners to help them stay in place (see the RDS website page on eating and drinking for further information).
- Laying out clothes on the bed, in the order which they need to be put on can help minimise confusion.
- Try reducing the number of clothes that are kept at any one time in wardrobes and drawers to make more space and allow for easier handling.
- Aim to keep things tidy and structured.
- Consider keeping clothes that are for future seasons in storage and changing them over with current clothes when the seasons change.
- Where possible, arrange clothes in a logical order. For example, keeping short sleeved tops on one shelf, long sleeved tops on another.
- Try hanging entire outfits together on one hanger to minimise the need to search for outfit combinations on a daily basis.
- It might be useful to clearly label (if labels or pictures can be recognised) what type of clothes each shelf or drawer contains.
- If there is a reluctance to change clothes, have multiple replica sets of clothes that can be substituted, so that essential laundering can be done.
- See the RDS website page on adapting practically in the home environment for further information.
Washing
Living with dementia can sometimes mean that we need to take a new look at the ways we wash, shower or take a bath. Changes in the way someone sees things, identifies their meaning and purpose, and uses them effectively, are typical for many people living with dementia. Communicating our needs and understanding people’s responses and actions can be equally challenging at times. Getting in and out of the shower or bath safely may require additional resources, such as grab rails or seats, which can be provided with support via an occupational therapist and/or physiotherapist.
Symptoms such as apathy, lack of insight or low mood might affect how often someone feels washing, shaving or paying attention to other personal hygiene activities is necessary. A lack of confidence arising from reduced abilities might mean a person living with dementia is less willing to engage in these activities even though they would like to.
We may be able to change shaving and hair washing habits and styles, in ways that help to reduce unnecessary effort and anxiety whilst maximising independence.
Examples of ways that washing can be impacted in people living with dementia
“We made the bath time accessories as colourful and interesting as possible.”
“My husband puts the soap onto a sponge and hands this to me when I am having a shower – this way I can still have a shower relatively independently and I am not getting so frustrated with trying to find the soap.”
“Using hygiene wipes instead of a full wash was revolutionary for us. Letting go of some of the pressures and habits around washing every day brought a huge relief to all of us.”
“We found that dad copied our actions more easily than following instructions. Standing in the bathroom brushing my teeth was often a trigger for him to do the same.”
Examples of ways that washing can be impacted in people living with dementia include:
- changes in awareness of when or how to wash, shower or take a bath
- changes in balance and spatial awareness can affect how we co-ordinate washing activities
- changes in vision, coordination and fine motor skills may affect our ability to use the bathroom and associated appliances
- feeling less confident in using the bathroom appliances, or embarrassed at needing to ask for help, can lead to a reduced willingness to want to take a bath or shower
- uncertainty about how the shower works, anxiety about spilling or flooding water, concerns about which tap is hot or cold are all factors that can impact willingness to engage in washing activities
- mood and behavioural changes which can lead to a range of additional challenges, including anxiety and additional worrying about washing, apathy and a lack of awareness or interest in the activity
- depression or anxiety making someone feel less inclined to engage with their usual routines, as can other symptoms such as apathy or mood changes
- some medication causing side effects that cause a person living with dementia to be less likely to engage in their usual routines
- an increased sensitivity to the feeling of the water on the skin which can be painful and unpleasant, as can increased sensitivity to temperature (see RDS website page on the senses for more information)
- changes in the ability to recognise toiletry items which can lead to mistakes that are uncomfortable or embarrassing
Tips, strategies and adaptations for washing
- We might decide to reduce the number of days we take a bath or shower and opt for a simple wash in between times. Try to arrange for washing and bathing activities to take place at a time that is most helpful and appropriate (it may be that people feel more able to manage washing and bathing activities later in the morning, or earlier in the evening than previously). If the person living with dementia is at their best in the middle of the day, then maybe this is a better time to arrange to take a bath or shower, and delay getting dressed until later than usual on bath or shower days.
- If taking a shower has become uncomfortable due to the water pressure, try reducing the pressure in the showerhead, or taking a bath instead.
- Test out different water temperatures to see if any are more comfortable than others (so far as it is safe to do).
- Opting for hairstyles which are more manageable, or having a hairdresser come to the house to help with washing and drying hair, might be alternatives to consider.
- Dry shampoo or cleansing body wipes can be an intermittent alternative to more traditional options.
- Switching to an electric shaver rather than a wet shave routine.
- Using a local barber for a professional shave can be a pleasant as well as functional experience.
- Podiatrists can help maintain foot hygiene, as well as treat problems. They are often available for home visits.
- Having a coloured shower curtain or hanging a towel over a clear glass screen can help create a sense of privacy, if assistance and support in the bathroom is required.
- Many bathroom suites are white in colour – and shiny in appearance. Try to bring in colour contrasts where possible. For example, place a bold coloured toothbrush in a contrasting coloured pot, and have toothpaste in a tube which is a different colour again.
- Use coloured towels break up otherwise white or chrome surfaces and rails.
- Position coloured soap and soap dishes in easily reachable places by the sink or shower/bath.
- Try sticking contrasting coloured sticky tape on taps or handles and flush levers to aid identification and location.
- Minimise the clutter on surfaces and reduce unnecessary items making it easier to identify essential equipment.
- Allow extra time for using the bathroom as it may take longer to complete activities.
- Number toiletries or cosmetics in the order which they are used.
- Grab rails and non-slip flooring can help maximise safety generally.
- If the person living with dementia has movement or mobility difficulties, they may benefit from adaptations, including handrails. Speak to your GP or social services to request an assessment from an occupational therapist, who can advise on adaptations to the bathroom. See the additional resources section at the bottom of the page for further information.
Continence (using the toilet)
As we get older, many of us will experience times when we don’t get to the toilet in time and are incontinent of either wee (urine) or poo (faeces). These are usually times when we have either left it too late to hold on, or when we have eaten foods which are richer than usual or have upset our digestive system in some way. Or because of other underlying conditions such as a urinary tract infection or an enlarged prostrate. They can usually be rectified or treated by changing our behaviour or taking the necessary medications.
Changes in the way the brain receives and passes on messages from the bladder and bowel mean that some people living with dementia are not able to recognise or react to the feeling that they need to use the toilet. Problems with mobility, visual and spatial awareness or coordination mean that for some people, working out where the bathroom is, recognising the toilet once they get there, and removing clothing quickly enough to use the toilet in time all add to the challenges they face. Working out how to get incontinence pads securely placed into underwear can be similarly challenging. Depression, apathy or having too much else going on can all play a part in incontinence for people living with dementia.
Examples of ways that continence can be impacted in people living with dementia
“I wish I had a bit more warning about when I might need to go. By the time I have got myself to the bathroom and made sure I am close enough to the toilet with my zip undone it’s usually too late.”
“I wear a pad just to give me a bit more protection and buy me time if I need it. But I need help, just to make sure I have got it the right way round. Otherwise it’s uncomfortable and doesn’t do the job!”
“What I find so hard is that Mum doesn’t seem to mind sitting in soiled clothes. She obviously can’t smell that she has had an accident, and doesn’t seem to notice that she is wet. I find this so hard as it is so far from the person she ever was.”
“He rarely says that he needs the loo… but I have come to work out the signs. He will become agitated and fiddly… and I know that he is feeling the urge to go. At home it’s easy to get into the bathroom and I carry a Radar key and a ‘bladder and bowel’ card for when we are out, so that we can access toilets quickly.”
Examples of ways that continence can be impacted in people living with dementia include:
- not leaving enough time to get to the bathroom
- difficulties working out how to get to the bathroom, either at home or in other environments
- in an attempt to avoid incontinence, people sometimes use any object they can find as a replacement for the toilet, so a wastepaper bin or vase might be used as an emergency measure
- if a person is confused about their surroundings or unable to recognise objects, they may use inappropriate objects as a toilet without realising
- not being able to secure incontinence aids, for example, pads or sheath catheters securely and effectively
- embarrassment about incontinence sometimes leads to people hiding away soiled clothes and paper, rather than asking for help. Not knowing how to take the necessary steps to clean up after an accident can also mean that situations arise where soiled items are left uncleaned
- not recognising the sensations that mean a visit to the toilet is necessary
- not being aware of being wet or soiled
Tips, strategies and adaptations for continence
- Drink liquids throughout the day. Problems with continence can lead to a reluctance to drink because we are worried about needing to use the toilet, but it is important that someone living with dementia doesn’t become dehydrated, as this can lead to other problems like increased confusion and constipation. See the RDS website page on eating and drinking for further information.
- Encouraging a safe and appropriate level of physical activity can be helpful in maintaining regular bowel movements. See the RDS website page on exercise for further information.
- Use colour to clearly distinguish the toilet from other sanitary ware in the bathroom. It may be possible to affix a toilet seat that is a different colour to the rest of the bathroom suite, making it clearer to identify and use.
- Coloured sticky tape over the flush lever can help with identification and location.
- Motion activated lights for the toilet bowl can be helpful (an example is one at B&M – but please do shop around).
- Having the word ‘Toilet’ and a picture of a toilet on the bathroom door can be a helpful orientation prompt., and/or leaving the bathroom door open when not in use.
- Setting a reminder to use the toilet regularly can help reduce the risk of last-minute dashes.
- Adaptive clothing can make it easier for people living with dementia to use the toilet independently e.g. no buttons or zips (see the additional resources section at the end of this page for more information)
- Hygiene wipes can be used intermittently as an alternative to washing, or when washing is not possible.
- Bathroom mirrors may be confusing or distressing for people living with dementia- you can remove or cover them if so.
- Request advice from continence advisory services, and access resources such as a radar key (see the additional resources section at the end of this page for more information)
- If the person living with dementia has movement or mobility difficulties, they may benefit from adaptations, including handrails and a raised toilet seat. Speak to your GP or social services to request an assessment from an occupational therapist, who can advise on adaptations to the bathroom.
Dental care and oral health
The changes in the way the brain transmits and processes messages can affect the way in which oral hygiene and dental routines are remembered and performed. Remembering to brush our teeth as regularly as we ought to, recognising how long we have brushed for, and applying the additional techniques we usually use, such as flossing, can become more complex to carry out as the symptoms of dementia progress.
Some people living with dementia develop new oral habits. Teeth grinding, lip smacking or having a tendency to want to chew or suck are some examples. Some medications can change the amount of saliva we produce- either increasing it or decreasing it, which can in turn affect our oral hygiene. Changes in food preferences, and the fact that some essential medications contain sugar, mean that dental and oral hygiene is particularly important to maintain, despite the challenges posed by a dementia diagnosis.
Examples of ways that oral hygiene an be impacted in people living with dementia
“Dad’s shirt will sometimes be drenched within a few hours of getting up– we are constantly changing the flannel that we place underneath his chin to try and soak up the excess dribble.”
“The toothbrush is too fiddly for me to use. I just can’t get the toothpaste out of the tube and onto the brush these days. I have tried all sorts of alternatives , but have decided it is just one of those things I need someone else to do for me.”
“I am worried that she will grind her teeth away. And the sound drives me to distraction!”
Examples of ways that oral hygiene an be impacted in people living with dementia include:
- grinding teeth– often without awareness
- making inadvertent sounds using the mouth or lips. Sometimes these are occasional in nature, and at other times repetitive and persistent
- wanting to chew, suck or swallow
- swallowing less frequently than usual (see the RDS website information on swallowing for further details)
- changes in food preferences (especially when for sweet foods and drinks) and a reduced ability to manage the more intricate details of oral hygiene can lead to an increase in dental cavities and oral infections
- having less awareness of the need to swallow can lead to excessive dribbling
- being less able to manage day to day oral hygiene activities because of difficulties coordinating, seeing or recognising the necessary objects and activities
Tips, strategies and adaptations for dental care and oral health
- Lay out any oral care equipment in advance of it being used.
- Provide visual cues and prompts to help remind about the activity being performed.
- ‘Doing it together’– it can be easier to copy someone else’s behaviour. Role model the tooth brushing activity with readily accessible equipment available for the person living with dementia.
- It sometimes helps gently bring a person’s hand to their mouth while describing or demonstrating the activity, by way of an assistance to the initiation. Or to gently put a hand under their hand, on the brush to do the activity together.
- Try softer brushes, ideally with as large a handle as possible to enable easy handling, and make sure they are colour contrasted to other items in the bathroom. Children’s toothbrush products might be appropriate.
- Non foaming toothpaste might be easier to manage as it feels less unusual inside the mouth and can be easier to spit out.
- If brushing is problematic, speak to a dentist about the use of dental wipes or gum (if it is safe to use). Fluoride treatments might also be recommended to help prevent decay in people who are unable to maintain regular oral hygiene routines.
- Changing the environment in which teeth brushing takes place. It might be easier to brush teeth using a bowl, whilst sitting on a comfortable chair rather than in the bathroom with the taps running, glare and other distractions. Or maybe it would be less of an issue to brush teeth whilst in the shower. Have the brush ready for use in advance.
- When visiting the dentist, get an appointment for a time of day that is best for the person living with dementia and make sure the dentist and surgery staff are aware of the dementia diagnosis. Ask whether they have had any additional training. In some areas, dental clinics provide light sedation for anxious patients. Community dentists might also be available. Please speak to the RDS Direct Support team by emailing contact@raredementiasupport.org for information that might be helpful to share with relevant healthcare professionals
- Request a medical review if teeth grinding or excessive dribbling continues. Some people find that ‘oral chew sticks’ help alleviate the problem, but it is important to seek medical advice before using these.
- This RDS video describes some additional tips for dental hygiene
People who can help
Many people living with dementia work out ways to adapt to and manage the symptoms that they live with. Conversations with other people who are living with a similar diagnosis often provide empowering and insightful hints, tips and suggestions, shared by those who understand the impact better than anyone. There are some aspects of symptom management which professionals can assist with in meaningful and ongoing ways and it is important to engage the services of professionals where possible.