Still hard to swallow

(A note before I begin this blog: You should not consider anything written in this blog as medical advice for you or anyone you care for).

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at dysphagia (swallowing problems).

By a huge margin my most popular D4Dementia blog post is ‘Hard to swallow’, which charts the four years that my dad lived with dysphagia alongside his vascular dementia. In that blog I explained dysphagia as follows:

"Something that is sadly very common in advanced dementia is the decline of the swallowing reflex. The condition, known as dysphagia, is extremely distressing for both the person affected and those caring for them, and can be fatal, either directly through choking or indirectly by setting up aspiration pneumonia. 

"The uncontrollable coughing that often accompanies a swallowing problem, indicating that something taken orally has gone into the trachea (windpipe) instead of the oesophagus, can leave the person affected gasping for breath, red-faced and sweating. For anyone who has witnessed someone choking, it is a terrifying moment."

I wrote Hard to swallow in September 2012, less than 5 months after my dad had died from an aspiration pneumonia, so to say this is a topic close to my heart is an understatement. But it must also be remembered that with previous good support my dad lived reasonably well with dysphagia (and no teeth!), still enjoyed food and drinks and maintained mostly adequate levels of nutrition and hydration, so there is hope and positivity too. See my interview with Nourish by Jane Clarke for more insights into my dad's dysphagia.

In the years since dad died I have met numerous people who are living with dementia and dysphagia, and yet despite this swallowing problems are frequently the elephant in the room when thinking about the progression of dementia. Families often write to me, having read my Hard to swallow blog, saying that they simply had no idea that as their loved one’s dementia progressed they would develop swallowing problems.

As a result they feel unprepared, unsure of how to care for their loved one and, frankly, so frightened they worry about supporting their loved one to take anything orally, be that food, drinks or medication. Why we don’t talk about dysphagia more is a mystery to me - understanding how to support a person helps hugely in dispelling myths and calming fears. Dysphagia doesn’t have to be a watchword for unpalatable meals that look like vomit mush, or an undignified experience at every mealtime. As I said in my Hard to swallow blog: 

"Despite my father’s advanced dementia, the Speech and Language therapist was successful in assessing him when his swallowing problems were first identified… and gave us excellent advice that helped to give dad quality of life and give us confidence in caring for him."

That professional support is key, but as is so often the way as services are cut and becoming overstretched it can be support that is very hard to come by. Indeed, in some countries (I’ve had emails from around the world from families whose loved ones are living with dementia and dysphagia) such support doesn’t exist at all as someone who wrote to me from South America in 2016 explained:

"Unfortunately we don't have speech therapists who can guide me on how to handle my dad’s dysphagia. I import liquid thickeners to adjust the consistency of his drinks."

As if supporting a person with dysphagia isn’t daunting enough, to be in this position is intolerable. With such a lack of face-to-face professional support for many families, I hope that the tips and advice online - including those in my Hard to swallow blog - are helpful.

In the years since my dad died, my training and mentoring with care providers has enabled me to understand additional methods for supporting a person with dementia and dysphagia that go beyond those documented in my 2012 blog, and I wanted to share some of those here:

•   Straws can cause problems - Liquid drawn through a straw can often hit a person’s mouth faster than that taken without a straw, making straws potentially dangerous for some people with dysphagia. 

•   Be especially patient in helping the person to drink - Thickened drinks take many people with dysphagia longer than you might imagine to consume, and most thickeners also make drinks more filling. Therefore little and often is a really important motto for helping to keep a person with dysphagia hydrated.

•   Equally, for many people with dysphagia meals are often best provided little and often - The effort required to process food in the mouth and swallow it for a person with dysphagia is immense, far greater than for a person without dysphagia. So the idea of three set meals a day and those meals filling the person up isn’t a sensible approach. Try smaller portions, that the person can eat at their own pace in shorter periods of time, and follow up with further small portions throughout the day at times when the person is alert and correctly positioned upright to eat and drink.

•   Try using teaspoons to support a person to eat - This will naturally make each mouthful a smaller amount than larger cutlery will provide.

•   If the person you are supporting doesn’t like the taste of thickeners (and despite what the manufacturers say, thickeners do change the taste of foods and drinks), natural alternatives I’ve seen that are popular (though never tried with my dad) include smooth-mashed avocado, smooth peanut butter (providing the person isn’t allergic to nuts), thick Greek yogurt or kefir (if the person can tolerate dairy products), smooth-mashed banana and smooth-mashed or pulverised cannellini beans. Obviously the choice you make depends on whether you are trying to thicken a savoury or sweet food or beverage, and if that food or drink is being served hot or cold.

•   Some people have said to me that making foods or drinks sour, for example by adding lemon juice, helps to trigger the swallowing reflex.

•   Don’t eat too close to bedtime - Ideally allow 2+ hours after eating before going to bed.

For more information on nutrition and hydration, see my blogs ‘Hydrated and Happy’, ‘Food for thought’ and ‘The digestive balance’.

Until next time...

You can follow me on Twitter: @bethyb1886
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Do something new... with mealtimes

Welcome to the first of my seven blog posts for UK Dementia Awareness Week 2015.

This year's Dementia Awareness Week centres around the theme of doing something new for people with dementia, under the mantra that ‘Life doesn’t have to end when dementia begins’. For many people living with dementia in care homes, however, a lack of opportunities to have meaningful occupation and activity, or even just enjoy the simple pleasures that many of us take for granted, can lead to life feeling like it really has ended.

Over this Dementia Awareness Week (DAW2015) I want to look at some of the positive things relatives and staff can do to enhance the lived experience of people with dementia in care homes. They may be new things, or they may be old favourites, but they all share in the ability to turn a boring day into something a little bit more special.

 

Day 1: Food and drink

We all have to eat, and yet in care homes mealtimes, and indeed tea and coffee breaks, often become very transactional. The people who live in the care home are seated, the food arrives, the food is served, people eat, or are helped to eat, and two courses later everything is cleared away. It’s not always the most appetising process as stale smells linger in the air, nor does it promote eating as a really positive experience, but it is possible to turn that transactional approach on its head.

Some care homes actively encourage their care staff to eat with their residents. This promotes inclusivity, enables a supportive watch and learn approach for people with dementia who are perhaps struggling to remember how to use cutlery or eat a meal, and is an added perk for hard-working and dedicated care staff. Equally, why not encourage relatives to join in mealtimes – some of our happiest times with my dad were spend sharing a meal together at his care home. Think also about anything residents could do to participate in the mealtime experience - helping to lay the table, serve food or clear away. Some people may enjoy helping and feel it gives them an added purpose in life.

Mealtimes and break times don’t always have to be in the dining room either. For some individuals with dementia routine is vital and you wouldn’t want to upset that, but for other people a picnic in the garden, or an afternoon cream tea on the terrace makes a really refreshing change that stimulates appetites and makes eating an enjoyable social event. All it takes is a bit of creativity and planning on the part of the staff team, and some enthusiasm/participation from relatives always helps too.

Finally, think about your menus. For some people tried-and-tested favourite meals are really important, but another individual whose appetite is flagging and weight is dropping away may need their diet to be invigorated with new tastes (and possibly stronger tastes if their taste buds aren't responding too well), different styles, presentations or consistency (thinking here particularly about pureed food for people with a swallowing problem). Time of day is also important. Not everyone wants to eat when the routines of the care home dictate they should eat, so be mindful of individual preferences and ensure they are catered for.

More information, tips and advice on food and drink, eating and dining techniques can be found in the following D4Dementia blog posts:

Food for thought: http://d4dementia.blogspot.co.uk/2012/05/food-for-thought.html

The digestive balance: http://d4dementia.blogspot.co.uk/2014/03/the-digestive-balance.html

Hydrated and happy: http://d4dementia.blogspot.co.uk/2013/05/hydrated-and-happy.html

Hard to swallow: http://d4dementia.blogspot.co.uk/2012/09/hard-to-swallow.html

Next post on 18 May 2015.
Until then...

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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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