Don't let the sun go down on me

Of all the words associated with the various symptoms and effects that dementia can have on a person, 'sundowning' is one of the most curious. It is a word to describe when a person with dementia becomes more active and/or distressed later in day. This activity and/or distress coincides with the light fading as the sun goes down, hence how we arrive at the word 'sundowning'.

At this point I should stress, as I have many times in the past in other blog posts, that I'm not a fan of labelling people with dementia. I no more like the term 'sundowner' than I like 'wanderer' or 'feeder'. Sundowner may also be bracketed with describing a person as 'aggressive', since one of the ways in which a person with dementia may express themselves during a period of sundowning is through physical or verbal interactions that, for them, are the only way they feel they can communicate how they are feeling.

Aggression, as I have written about previously, is always going to be linked somehow to an unmet need, which is true of anything labelled a 'challenging behaviour' (another term I dislike immensely). With this principle in mind, it's vital that we unpick the key elements of 'sundowning' to understand what the person with dementia is experiencing, and why they might react in the way that they are.

The link to the time of day and the levels of natural light is very interesting. It is certainly my experience, and something many people I've spoken to agree with, that any problems or anxieties you may have in your life always seem worse as darkness descends and throughout night time. Even as a child, I would be anxious at night in a way that I would never be when I woke up in the morning. Daylight seems to make us feel more in control of our emotional responses, whereas night time makes us feel more vulnerable.

There are also other important elements at play for a person who is living with dementia. Firstly they may be unsure of the time, so find light fading very confusing and distressing. They may not feel like they have had a 'daytime' at all, so why should the light now be fading and bringing darkness back? The person may feel like they've been in darkness very recently, particularly if they've had their eyes shut through choice or because they've been sleeping, and find it disturbing that darkness is returning so soon.

Many people with dementia lose track of their sleeping patterns, and may sleep during the day, which again can disrupt those natural rhythms of daytime and night time. Visual disturbances, like hallucinations, are also strongly associated with darkness, which could make night time very frightening. Then there is the problem that day times for people with dementia can often be quite boring and not filled with enough activity, and physical exertion, to welcome the cues that come from the light fading that suggests rest, relaxation and bedtime. The person may simple feel that night time isn't what they want, or need, at all.

One of the best examples I've promoted to support a person through difficulties experienced later in the day is to make that support proactive rather than reactive. Combatting problems that arise later in the day begins in the morning, as the person gets up. Their day needs to be filled with as much occupation and activity as that person can cope with, good levels of nutrition and hydration (this is vital to fuel the body and help the mind to process what is happening around the person) and ideally involve some fresh air. If the daylight hours can be filled with as much 'normality' as possible – and no boredom - the evening time will hopefully be welcomed as a time for rest, relaxation and eventually sleep.

For people with dementia who still want to keep on the go into the evening, bear in mind that they may be conditioned to this from their earlier life where they may have come home from work, had to cook, help children with homework and their bedtime routines, and then still needed to do housework - washing up, laundry etc - or paperwork before they could begin to relax. To them, that is their normality, and not 'sundowning'.

Eventually winding down the day in a way that the person with dementia finds familiar and comforting, like having a bath, meal or favourite drink (yes, even an alcoholic one if wanted and medication allows that - remember that we are supporting an adult, not a child!), with music playing, some reading (on paper or via audio book) or a film can also help to trigger those soothing evening cues. Be mindful that light from electronics (like TV) aren't welcome for everyone. It may also help the person to take an evening walk if that's something they feel comfortable with and perhaps used to enjoy (for example, they may have always taken the dog for a walk in the evenings, or walked home from after school activities or work). Just bear in mind that walking outside in fading light or darkness can present additional tripping or falling hazards, and could terrify some people with dementia, particularly if they are having visual disturbances, so approach this carefully (being mindful of also not becoming risk adverse in relation to health and safely issues).

Finally, think about how the person's environment supports them as the light fades and darkness comes. Is artificial light supporting them well? Dingy light may affect their mood. Some people may prefer some 'daylight lighting' that helps combat feelings of SAD (Seasonal Affective Disorder), while others will want warm, soft lighting. Lighting that helps navigation around the home or care home is important, be that overhead or floor level. Think about other 'cosy' cues too, particularly in the wintertime when periods of darkness are so much longer - lighting up an open fire effect heater for example, or lights that look like candles.

If you are a professional care worker, understanding the person's life history will be vital in supporting them to cope with evening time in the most appropriate way for them that minimises any distress they are feeling. Above all though, remember that however you support a person as the sun goes down, their reactions aren't about making your life more difficult (at a time when you are possibly feeling fatigued yourself after a long day), but merely a manifestation of how they are feeling as a result of their dementia.

Until next time...

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Troubleshooting checklist

Advanced dementia brings many challenges for the person living with it and also their family and carer(s). Not only can you often feel like you need to be a bit of a detective for your loved one (as I described here in relation to detecting pain), you can also find yourself baffled by what can appear to be very simple problems that frequently prove quite difficult to solve.

Drawing upon our experiences with my dad, and judging by the correspondence I receive about problems that are troubling carers, families and professionals, there are some common issues that many of us struggle to find solutions to. In this blog post I'm going to tackle five of them, starting with something that plagued my poor dad.

Dry/Itchy skin

There are few more distressing conditions than those that irritate our skin. The skin is the largest organ of the body, but unfortunately as we age our skin becomes thinner, more prone to bruising and tearing, and can suffer immensely from poor diet, dehydration and a lack of attention to detail in cleaning and moisturising.

If a person becomes incontinent the delicate genital skin can become very sore and inflamed if it is kept in contact with soiled pads. Equally, if a person can no longer wash themselves, those assisting them are unlikely to do it with the same vigour and thoroughness as the individual themselves would have in years past, mostly because we are all naturally worried about hurting anyone we are caring for.

Other problems can include difficulty in getting someone into a bath or shower, increasing the temptation to use deodorants or perfumes as very inadequate substitutes. Continuing to use very harsh commercial washing products, rather than switching to more natural alternatives (that can be found online), can dry and irritate the skin. A person with advanced dementia can also scratch skin until it bleeds out of boredom, so fingernails must be kept short and neatly filed.

A washing routine that involves a full body bath or shower is vital - bed baths, though sometimes necessary, are no substitute for a proper wash and rinse in the long term. Switching to natural washing and moisturising products, alongside non-biological laundry detergents, should help to eliminate irritants. If you are assisting a person to wash, make sure that when you've washed and rinsed them that they don't have dry scaly skin remaining, particularly on their scalp. This often doesn't get washed properly because of the hair covering it, but scaly skin washes off with a few minutes of a soapy head massage. Dry the person’s body thoroughly and apply a natural moisturising product - anything containing alcohol is likely to dry the skin (and that includes common prescription preparations that are meant to solve dry skin).

One final tip, the smells of familiar cosmetics or washing products can be great for reminiscence, even if the skin can no longer tolerate them. You can always spray perfumes onto fabrics (with care) or create scent boxes, where you put individuals products or essential oils into different compartments of a box and sit with a person recounting what the smells represent to them.

Poor appetite

Thankfully this is something that my father never had to live with, aside from the times when he was unwell, but it is very common for people with advanced dementia to experience a poor appetite. I've written extensively about digestion and eating, but there are a few more tips to share with you.

Taste buds change as we age, often becoming less sensitive. This is particularly true for people living with advanced dementia, who are known to struggle both with tastes and textures of food, as well as the act of swallowing itself. Ensure that dysphagia (swallowing problems) have been ruled out, alongside any dental issues. Make sure meals are served at an appropriate temperature, in a pleasant environment with no distractions, and that a familiar mealtime routine is used, including eating with your loved one to encourage them to eat too. Be mindful of the tableware you are using, including cloths, plates and cutlery. Offer additional healthy snacks between meals if necessary.

Food must be appetising - even when pureed. If in any doubt, try it yourself! Using food as reminiscence can work very well for some people, but equally those with a flagging appetite may need to be offered something new. Experiment with tastes and textures, and try stronger flavours - for example sweet and sour, curry or Italian food. Make sure that any drinks you are offering alongside the meal aren't tainting the taste (avoid squash and go for water or natural juice). 

Also offer a person opportunities to stimulate their appetite, with activity that makes them hungry and access to some fresh air. Finally, ensure you rule out side-effects of medications - even if a clinician reassures you that a medication isn't causing appetite problems, trust your gut instinct (pardon the pun). Many older people are on a cocktail of different medications, and the interaction between them could easily cause someone to go off their food.

Sleepiness

One of the things many families find very difficult to come to terms with is the increasing sleepiness of their loved one in the more advanced stages of dementia. A person with dementia may sleep more than usual during the day, making the relationship with relatives feel even more distant.

It can seem pointless spending time with your loved one if they are frequently asleep, but I always found the opposite to be true. Firstly it's special to be the first person they see when they wake up. Secondly, you can use the time for your own reflection and relaxation: There is something very peaceful about a loved one sleeping, and I always found it the perfect time to have a cuppa and put my feet up.

Increased sleepiness, beyond what is usual for the person, can indicate infection, particularly chest or UTI, so it's important to have those ruled out if you are concerned. Medications can often cause sleepiness, particularly antibiotics, and again be mindful of interactions between medications.  Also think about a person's environment - warmth and sunshine can be very sleep inducing for some people.

Certain times of the day are also more likely to produce sleepiness, for example after a particularly satisfying meal or even from passing an overdue bowel movement. In trying to understand sleepiness, also make sure you've examined night-time sleeping patterns – it sounds obvious, but if a person isn't sleeping well during the night it is hardly surprising that they are tired during the day.

The other, often overlooked, aspect to why people are sleepy is because they simply aren't offered anything to do. Imagine spending day after day sitting in a hot room with a TV blaring - most people would prefer to be dreaming than be subjected to that. Offer gentle encouragement towards occupation or activity, and suggest different activities if your initial suggestions are rejected.

Constipation

Being 'bunged up' is awful for anyone, but particularly for a person who is immobile and/or unable to articulate the discomfort they feel. Most people aren't great at talking about poo, but without the regular movement of it toxins build up in the body and pain and discomfort are rife.

If a person can still use the toilet unaided, constipation may not be immediately apparent to those who are supporting them, particularly if the person can't express the problems they are having. If a person is using incontinence pads, keeping a record of the soiling pattern of those is a useful indicator for both dehydration and changes in bowel movements.

One of the most important ways to prevent constipation is through good hydration and a diet rich in fibre, including fresh fruit and vegetables. In relation to diet, introduce different foods gradually or it may cause constipation to be replaced with diarrhoea. 

Exercise is also a vital component in preventing constipation. People with advanced dementia are often severely lacking in exercise if they have become immobile, but there are still ways to help, included seated exercise programmes that are offered with appropriate assistance. Even gentle massage of the belly can be very helpful, but make sure this is conducted by someone who is an expert in this form of therapy.

Finally, again ensure that you have ruled out any medication side-effects or interactions that could be causing constipation.

Feeling cold

Some of us feel the cold more than others. As we age, everyone is likely to feel the cold more, particularly if they have become immobile or lost weight. For most of us we can just get up, switch the heating on, shut the window, move to a different room, put extra clothing on or take a warm bath, but if someone cannot complete those tasks, or struggles to articulate how they are feeling, then they could be sat frozen and miserable, potentially leading to other health complications.

Whilst being in an environment that is too hot can be very unhealthy (hospitals and residential care homes take note!), sensitivity towards ambient temperature will vary from person to person. Infection and pain will also have a role to play in making a person feel cold or hot.

A blanket on the knees, leg warmers, cosy slippers, gloves/mittens or hats are all useful extra layers if an individual is feeling cold, but be mindful that a person with advanced dementia may persistently remove these items – sometimes because they are uncomfortable or making them too hot, but also potentially because they are unsure why they are wearing them or find the garments unfamiliar.

Think carefully about the environment, possible droughts, positioning near windows or doors, and hot spots (places where temperatures fluctuate in a room or between different rooms). When the season’s change, don’t assume that because you shed an extra layer or are happy to sit in a conservatory with the door open that a person with advanced dementia will feel the same. If a person is constantly losing weight, they will also feel the cold far more.

Aside from asking a person if they are warm enough, and reacting to what they tell you, observe them. Hold their hand, stroke their arm or head, or give a gentle massage if they are happy with that. Do they feel cold? Look at their facial expressions. Also be mindful of any medical conditions that affect their blood flow, and always remember that if they are poorly getting cold could make them worse.

Until next time...

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Catching some z’s

There are few things more closely associated with wellbeing than a good night’s sleep. It is something many of us take for granted until it is disturbed by the people or environment around us, or when those dreaded nights of insomnia strike and you lie in bed wishing more than anything that you were asleep.

Although some people can function well on very few hours of shut eye, most of us struggle through the day when we have not had the sleep we need. Sleep deprivation as a result of being a parent is well documented, and yet very little is said about the many carers who never get a good night’s sleep because they are looking after a loved one. For those who are caring for a relative with dementia, sleepless nights can become a feature of everyday life that lasts for many years, draining both the carer and the person with dementia physically and mentally.

From the night terrors, sweats and hallucinations that can often accompany the earlier stages of dementia, to the way in which the disease can eventually remove that vital understanding about daytime and night-time, dementia poses many challenges around sleeping for the person with it and those who are caring for them. As dementia progresses the person living with it may sleep more and more, and in the end-of-life stage constant sleeping is not unusual.

A classic sleeping pattern for people with dementia is napping in the daytime and then being wide awake in the evening. This was certainly true of my dad. Throughout much of his dementia his daily routine involved both a mid-morning nap (before lunchtime) and an extended afternoon nap between lunch and teatime. Come the evening, however, he was invariably wide awake and would remain so for many hours.

People with dementia will often nap for the same reasons that anyone else might, so it could be as a result of being very relaxed, becoming bored, or because the room they are in is very warm or sunny. It could be a side-effect of medication, or an indication that earlier activities have tired them out. Personally I always found it very calming to see my father having a peaceful forty winks. The only time I ever worried was when he developed a sudden pattern of excessive sleeping, which in his case was always a sign of an infection brewing.

Dad’s napping never really affected his ability to sleep at night, although over the years some of his GP’s still offered prescriptions for sleeping tablets like the pills were sweeties to be doled out to all residents. Dad had never been a person who went to bed particularly early (despite being a farmer who needed to be up at the crack of dawn) so we requested that the care home staff never put him to bed before 10pm. If he went to bed too early he would be very restless, moving himself around, making loud noises and appearing very distressed. He could easily sleep in his comfy chair earlier in the evening if he needed to, but mostly he would be bright eyed and listening to his music.

From a digestive point of view, it is also very important to monitor bedtimes in relation to eating times. Often as people get older their digestion slows down, and going to bed too early can cause indigestion, leading to pain and discomfort that the person with dementia may not be able to articulate. If that person also has a swallowing problem (dysphagia, which I wrote about here), it becomes even more important to be mindful of their bedtimes. With dysphagia it is vital that the person is kept upright whilst taking anything orally to prevent choking (in our experience a profiling bed was never as effective as a chair and cushions for support). In my dad’s case this advice also extended to a prolonged period after any food or drinks (usually at least 2 hours) to help prevent vomiting, and reduce the chances of aspirating any vomit (which could lead to pneumonia).

There is often a temptation in care homes to put people with dementia to bed early just because it may be more convenient for the running of the home. If a person has been used to going to bed early, or worked shifts, then of course their established sleeping pattern should be respected, but if someone has always gone to bed later, making them revert to early bedtimes, the like of which they may not have experienced since they were a child, is totally unacceptable unless the person themselves wants to change their routine.

The exception of course is when illness strikes, which will naturally change sleeping patterns immensely. During those times bed is often the best place to rest and recuperate, although in my father’s case he had to feel extremely poorly before he would sleep peacefully in his bed without becoming agitated. Sleeping upright in his chair is something that dad had done prior to his dementia when he was chesty, and he retained that ability to sleep restfully in his chair during the numerous chest infections that he had when he was living with dementia.

In dementia’s shifting landscape, sleeping patterns may well come in phases, and they often require huge patience in order to cope with them. Helping someone with dementia to sleep, particularly at night, is about understanding their preferred times and places to sleep, the things that help them get to sleep or the triggers that keep them awake. Do that, and when they are finally catching those z’s, my best advice would be to catch some yourself.

Until next time...

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