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.
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.
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.
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.
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.
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…