Repetition, repetition, repetition

One of the symptoms of dementia that those around the person with dementia find most difficult to cope with is repetition. Families and professionals alike often express frustration, leading onto exasperation, which often ends in irritation and possibly even an argument with the person who has dementia.

Repetition is a very common symptom of dementia. My dad went through a stage of repeating the same questions, and as his communication ability diminished the repetitive questions were replaced by saying the same words or phrases over and over again. To begin with those words or phrases would sometimes bear some correlation to the situation or conversation going on at that time, but as the years went by they became completely random.

The patterns of my dad's repetitive speech often left me wondering what message he was trying to convey to me, and that is arguably one of the most difficult aspects of repetition for the people around an individual with dementia. You desperately want to unravel the meaning behind their words and respond to that with an answer that provides the reassurance they may be looking for, but without being able to move the conversation on the prospect of finding a resolution that gets to the heart of what the person with dementia needs or wants becomes a distant one.

As someone observing a loved one's life with dementia, it is impossible to truly know the impact of repetition on the person who is living with dementia. I would suggest, however, that many of the feelings that a carer is experiencing (frustration, exasperation and irritation) are potentially also being experienced by the person with dementia too. The difficulty for the person with dementia is that they don't necessarily have the ability, either verbally or through physical demonstration (body language or expression), to make those feelings clear. That puts them at a distinct disadvantage to those of us who are family carers or care workers.

It's interesting that as a carer of a person with dementia, the carer's feelings are often seen to be somehow different from the person with dementia, but the emotions that go alongside coping with repetition - as with so many other symptoms of dementia - can be remarkably similar for the person with dementia and those around them, giving us more in common than we often realise.

Developing coping mechanisms is a key attribute for a carer, because so many people simply don't cope well with constant repetition – examples of coping methods include taking a quick ‘time out’ or deep breathing exercises (these may sound trivial, but they do work for some carers). Patience is another key attribute. I’ve never yet seen or experienced a resolution to a person’s constant repetition by losing patience with them. Yes they may have asked what the time is, requested the toilet or questioned when the next mealtime is on 20 occasions already, but getting angry is unlikely to prevent the next 20 requests. Equally, telling the person that they’ve already asked that question or said that statement isn’t likely to help end their repetition because they may very well not remember what they said previously.

Of course it’s easy to say ‘exercise patience’ – repetition can be incredibly mentally draining to both listen to and constantly respond to  – but alongside patience there are other techniques that can be helpful, although I’d stress that as each person with dementia is an individual, what will work well for one person won’t necessarily have an impact with someone else. 

Techniques to try include:

Embedding your response: Persistent questioning about the time can sometimes be resolved by providing a ‘dementia friendly’ clock or similar item, enabling the person with dementia to track time themselves which helps facilitate their independence. Coupling that with a day-by-day board that enables the person to track what is happening when can help with questions about daily events, like mealtimes, whilst good signage can assist with enabling the person to go to the toilet independently without having to ask. However, visual aids only work if the person has good vision and the cognitive ability to absorb what they are seeing, so make sure this is checked – move to audible reminders if hearing is a stronger sense than vision. Likewise, if the person doesn't have the mobility to meet their needs (like going to the toilet), then your help will always be required.

Distraction – Changing the conversation: Some carers successfully use distraction techniques to move the conversation away from whatever the person with dementia is repeating and towards something else. This can work, although sometimes moving away from a topic causing repetition can then mean that wherever you steer the conversation to next will become a topic for repetition.

Distraction - Activity: Introducing an activity, be it something to do with daily living (“Let’s make a cup of tea,” or “Let’s do some housework.”) or a hobby that the person enjoys, can be helpful in taking their mind off whatever the topic is of their repetition. Offering the right activity for the moment is key here, and may need to be something more energetic, like going outside or making the bed, or could be something much more sedate, like reading a book together or singing songs.

What I personally wouldn’t advocate is ignoring the person. Some people use this as a technique in the belief that the person with dementia will simply give up the repetition when they don’t get a response, and by responding you only fuel repetition further – a bit like the parenting technique where you leave the child to self-sooth. However, in relation to dementia I dislike this as a technique because apart from anything else it feels disrespectful. It also does nothing to increase the person’s trust in those around them, doesn’t encourage their independence in any way (even though it may be used in the false belief that it does increase independence), doesn’t help to meet any unmet needs that they may have, and runs the risk of something vital being missed.

The risk, when repetition becomes very monotonous and wearing is that a carer becomes so immersed in coping with it that vital clues are ignored, which might result in an episode of incontinence or not recognizing when something is wrong with the person’s health. When repetition takes the form of answering yes to every question asked, or no to every question asked, it might seem reasonable (and easier) to take those answers at face value, but it may simply be that the person is repeating an answer because that’s their current pattern of repetition, rather than because they really intended to give that answer.

This doesn’t mean that the person with dementia is being untruthful, it’s just how their dementia is manifesting itself at that time. Always be alert that an answer on a key issue, like how a person is feeling in relation to their health, should also be accompanied by the carer observing the person to make sure vital opportunities – for example to spot the deterioration of an infection - aren’t missed.

One final key point about repetition is that it is rarely static indefinitely. What is the sole topic of repetition one week can easily change the next week, and sometimes repetition stops as suddenly as it began, in the same way that many dementia symptoms come and go. When all else fails, responding with soothing kindness will at least ensure that you have tried to alleviate any distress being felt, and that you have appreciated the key point that the person with dementia may be feeling just as unhappy about their repetition as you are.

Until next time...

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Terms of endearment – The ‘darling’ debate

A couple of months ago the Care Quality Commission (CQC) released a report detailing an inspection of a care home in Harrogate where the language used by staff when communicating with residents came under the spotlight. Care home staff had been using terms such as “sweetie”, “darling”, “handsome” and “love”, and the inspection team were concerned about these being “demeaning and patronising”.

Since then plenty of people have weighed in with their opinion on the use of terms of endearment in social care settings, and I’ve been fascinated at how polarised viewpoints have been on this issue. Some people feel such terms introduce welcome informality and infer kindness and compassion, whilst others have found them offensive and disrespectful.

Given that my dad spent the last nine years of his life in three different care homes, he and us as his family gathered plenty of experience in the different ways staff addressed dad. These ranged from the formal ‘Mr Britton’ and the less formal use of his forename, all the way through to calling him “uncle”, which was intended by staff as a term of endearment.

I can’t say what dad thought of the different ways in which he was addressed, since he never spoke to me about them or reacted differently depending on how he was addressed. I personally never had a particular issue with any of the ways in which he was addressed, which starkly contrasts with other usage of language that I really did have a massive problem with.

The term “change your nappy” when referring to changing dad’s incontinence pad was amongst the phrases I loathed the most, and something I touched on in my blog post R-E-S-P-E-C-T. This to me was a grossly inappropriate use of language, and interestingly given the largely overseas workforce was a phrase actually used by an English care worker, so it certainly wasn’t a case of inadvertently misunderstanding the meaning.

Ultimately of course, all use of language comes down to what the person being spoken to feels comfortable with. I can’t imagine many older people in a care home would want their incontinence pad to be described as a nappy, but I guess it’s possible that some people MIGHT find that phrase familiar to them and be comfortable with it. I just felt my dad would be extremely offended and it was entirely inappropriate for him.

The same of course is true with terms of endearment, and this was the point so clearly illustrated in the fallout from the CQC report. Whatever someone prefers to be called is what they should be called - individual preference should override any viewpoints staff or indeed inspectors have. But the key point here is choice. 

It’s vital to prominently document how someone likes to be addressed from the moment they enter any type of residential care. This should be known by all staff, including any agency staff from the beginning of their shift, and we should never make assumptions. Shortening forenames isn’t something everyone will like – a gentleman called Jonathan might not want to be called John. The formality of calling someone Mr or Mrs may make them feel uncomfortable… or it may be exactly how they want and expect to be addressed. A person may prefer the use of a middle name, or even prefer a name that isn’t associated with their given name at all.

Then of course there is this tricky area of terms of endearment. In some parts of the UK, especially more northern parts, terms of endearment are commonplace amongst the population and are likely to be heard everywhere from shops to hospitals, with many people finding them reassuring and comforting, like the familiar taste of regional foods or beverages.

But they will never be to everyone’s liking. I’ve been called “love” and “darling” before and not minded, but I wouldn’t appreciate being called “duck” for example. Care providers, no matter how heavy their workload, have to ensure that all individual preferences are catered for and not strayed from, no matter how easy it might be for staff members to revert to what is most familiar to them. In the end, it’s all about person-centred care and that begins from the very first interaction.

Of course staff will never get it right all of the time, that’s human nature and a rare slip of the tongue is forgivable, but it is perhaps worth reflecting on the following. Many people who move into residential care feel they lose a huge amount when they make that move, but to lose your right to be addressed as you would want to be is something no one should ever lose.

Until next time...

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Spotting dementia

My last D4Dementia blog was all about remembering the person, and as World Alzheimer’s Month draws to a close for 2015, I want to tackle another theme from this month of awareness raising – spotting the signs of dementia.

I’ve written previously about the symptoms of dementia, and I don’t want to replicate the information given in that blog post. If you are concerned that you may be developing dementia, or indeed that a person close to you could be, then you may find the information in that blog post helpful.

What I want to explore is the various prevailing attitudes around spotting the signs of dementia, and some of the issues around diagnosis, particularly in relation to health and social care professionals. In my work I see many different sides of the diagnosis coin, from people who are diagnosed in a timely and appropriate way to others who have to fight for a diagnosis. There is also another group who are perhaps best summed up as the ‘worried well’.

One of the most unfortunate side-effects of the fantastic work that’s been done to raise awareness of dementia in the UK is that there is, occasionally, a tendency to see any irregular lapses in memory or changes to a person’s approach to day-to-day life as the beginnings of dementia. Sometimes dementia may be behind such lapses or changes, or indeed MCI (Mild Cognitive Impairment - which isn’t dementia and may never lead to dementia), but it is also important to remember that as human beings we don’t live in a laboratory and are exposed to numerous other factors in our lives that can adversely affect us in ways that may appear to be related to dementia.

I have been reminded of this on more than one occasion so far in 2015 as I’ve gone about some of my consultancy work. I often visit care homes with a remit related to the provision of dementia care and support, and sometimes staff will detail concerns they have about a particular person in their care. From the outset I always say that concerns, no matter how trivial they may seem to the person relaying them, are always valid, and I would much rather social care staff are alert to changes in a person’s health and wellbeing than simply ignoring them.  

However, we must always remember that other medical conditions, side-effects of medication (and particularly multiple medications that stray into polypharmacy), spells in hospital, changes in living accommodation, changes in family relationships or bereavement, and even changes in the care home itself (different staff, routines or redecoration) can cause temporary, and sometimes more long-term, negative effects for older people. 

Those effects may appear to be related to dementia, and of course the development of dementia can co-exist with any of the factors I’ve listed above, but jumping to conclusions isn’t helpful for anyone, not least the older person living in that care home who is perhaps already feeling like they're living under a sizable microscope. Documenting changes to build up a reliable picture, whilst utilising person-centred care skills to address any newly found deficiencies in the person’s care or environment (more one-to-one time, reviewing health/medication, making time to talk and listen to the person, offering comfort, occupation etc) is perhaps more helpful than immediately chasing after a diagnostic label.

The flip side of these circumstances is often something I hear about when family members contact me with concerns about a loved one who is (usually) living alone. Often they will have noticed changes over a considerable period of time, and found themselves gradually providing more and more care for their loved one. For many people, input from their GP, alongside some diagnostic tests and perhaps a referral to a memory clinic is the way in which those concerns are addressed.

But unfortunately that isn’t the case for everyone. Amongst the many families who’ve contact me this year was one who’d had the input of two GP’s over a considerable period of time, with both doctors coming to the conclusion that the individual giving concern wasn’t developing dementia. This was despite, to the best knowledge of the family, neither GP conducting the full range of tests and assessments – potentially, of course, because the person concerned didn’t consent to them.

What happens between a doctor and their patient is of course confidential, and therefore my anecdote will always be open to questioning and counter argument. My main concern, however, is for the individual concerned, whose state of health is putting them at risk of living in an unclean, unhealthy and potentially dangerous environment, and for the family who are struggling to provide the support their loved one needs because they simply aren’t supported themselves.

Whether a diagnosis of dementia is ever forthcoming or not for this person isn’t really the main problem. In theory of course a diagnosis should open doors to care and support, possibly even some medication, but frankly care and support should be there regardless of the judgement of this person’s GP when the family as a whole have clear and unequivocal social care needs.

Hopefully the advice I’ve provided will help this family, and of course you can’t fight everyone’s battles, but I think these two examples really show how polarised and fragmented the situation around spotting and diagnosing dementia remains, and that’s just in the UK. I’d be the first to acknowledge that significant strides have been made since the 10 years that my dad went without his diagnosis, but the spotting of dementia still remains a subjective and sometimes inaccurate art that verges between too much enthusiasm to diagnose and total oblivion to the blindingly obvious.

As awareness-raising messages about spotting the signs of dementia are refined over the months and years ahead, some sensible middle ground is undoubtedly needed.

Until next time...

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Remember me

My dad's legacy

Since 2012, this slide is how I have finished many a presentation at a conference or event. It's a simple philosophy, but a highly effective one at helping audiences remain grounded in the most vital aspect of any dementia-related discussion – the need to remember the person.

 

Remembering the person one of the topics of this year’s World Alzheimer’s Month (or World Dementia Month as I would prefer it to be called). For me, not a day goes by when I don't remember my dad, either through my personal reflections or through my work. I find that keeping my dad's memory alive, and helping others to learn from our experiences, is not only extremely cathartic but an amazing opportunity to help others that is really unlike anything else I could possibly do with my life.

 

I am mindful, however, that for some people whose loved ones have passed away having lived with dementia, remembering those relatives can be an acutely painful experience. We all experience dementia differently, and observe our loved ones through our own unique vision of them; for some people the pain, heartbreak and sadness is all they see and all they can remember.

 

Whilst I never deny the difficulties, sadness and heartbreak that accompanied my dad’s life with dementia - and actually frequently find that people would rather hear about those elements than the positives - it is the more positive aspects of my dad's life and care that I feel potentially offer the greatest insight, not least because despite all the awareness raising work that has happened around dementia, negative perceptions still outweigh positive ones.

 

For people whose loved ones are living with dementia now, if the positive messages don’t reach their ears and eyes, how are they to feel any hope, any sense of being able to live in the moment, and any way of appreciating how there are positive aspects to be found and enjoyed, if only you can find them and capture them, for however long they last?

 

Me and my dad

Without having those positive influences, so many families feel bereft, and often some family members will walk away from the person with the diagnosis. This leaves any remaining relatives to manage as best they can, and for the person with dementia to be condemned to feeling as though they’ve done something wrong. It’s no one’s fault that they develop dementia, but sometimes human emotions can be strangely mercurial in difficult circumstances.

 

I always feel immensely sad when I read about or talk to people who are really struggling to remember their loved one with dementia while that person is still alive. People sometimes hope distance brings closure, but if someone has been an important part of your life they can’t just be airbrushed out. Not everyone feels a natural inclination to stand by a loved one after a diagnosis of dementia, or indeed even just keep in touch, but some of those people perhaps just need a bit more support to see the difference they have the potential to make.

 

In my view, as networks, communities and societies we all have a responsibility here, because while the negative tidal wave of perceptions regarding dementia continues, it proliferates myths, intolerance and stigma, not to mention creating divisions that often wound people deeply, long after their loved one with dementia may have passed away. 

 

So, if you only do one thing this September for World Alzheimer’s Month, make it to put in that phone call, or write that letter, or make that visit, that says you haven’t forgotten a person you know who is currently living with dementia. And if you’re in the position I’m in with my dad and the person you loved is no longer here, think back, find that positive moment and tell people in your networks about it. 

 

We all have the potential to be the change we want to see, and from the smallest actions the greatest difference is often made. 

 

Until next time...

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Playing the numbers game

I write this blog on the cusp of September which is the 4^th World Alzheimer’s Month, a yearly international campaign to raise awareness and challenge stigma. Two announcements in August, both around prevalence, have kept dementia in the news. In case you missed them, here are the links: The Lancet and Alzheimer’s Disease International.

I’ve written before about my scepticism of dementia statistics. I am particularly wary of prevalence data and the dreaded ‘predicted’ numbers of people expected to develop dementia. I don’t feel the methodology behind many of these figures is anywhere near as robust as it should be, and whilst numbers make great headlines, I don’t feel they serve wider society well. In fact I’ve often wondered why we see so many statistics on the numbers of people predicted to develop dementia and yet so few figures for the numbers of services available, or the availability and uptake of different methods for living well with dementia.

Last time prevalence figures were revised downwards, I heard many whisperings of discontent from those who either work within or on the periphery of English dementia policy. It’s astonishing to consider that some people might not welcome such data, however questionable the methodology behind it is, but then dementia has been on an almost unstoppable bandwagon of negativity and doom and gloom headlines ever since the PM’s Dementia Challenge ignited unprecedented interest in the ‘D’ word.

The prospect that less people than previously thought may now go on to develop dementia in the UK is something to be applauded in my view, although I’m not convinced it has anything to do with lifestyle modifications being made by the population. I suspect these new predictions are just attempting to correct previously dubious data. I’d love to think that the population are taking precautions to improve their health by following preventative advice relating to diet, exercise and lifestyle, but I personally don’t feel those messages are anywhere near as embedded as they should, or need, to be.

Meanwhile of course, the Alzheimer’s Disease International (ADI) report paints a picture of increasing rates of dementia worldwide, and highlights how low and middle income countries in particular are likely to be affected by growing rates of dementia development in the years ahead. Without the health and care infrastructure we enjoy in the UK (however fragmented it is), not to mention lower levels of education and awareness, these predictions from ADI seem eminently sensible, albeit offering a huge challenge to the global community to try and offer people at risk of developing dementia, or already living with dementia, in these countries a chance to live a better life than they might otherwise have access to.

So how do we unpick all of this and become more informed citizens? A good place to start is by ignoring headlines that predict doom one day and a cure the next, and that play the numbers game by quoting figures that may appear very authoritative but in essence are based on what mostly amounts to some very complex analytical guesswork. In the same way that the rhetoric of loss associated with dementia and so avidly repeated in the media does nothing to help families navigate their way with dementia in positive and practical ways. The recent 'Dementiaville' programme was a classic example – if they told us once that the families featured were losing their loved ones to dementia they told us a hundred times.

Looking back, I suspect part of the reason why I was able to enjoy time with my dad in his latter years with dementia, and look back so fondly on much of what we did together is precisely because I didn’t inwardly digest statistics and negative portrayals of dementia. In saying that, I don’t for one moment underestimate the impact dementia has, it changed my father’s life and the lives of those around him in immeasurable ways, but it didn’t consume me. Living and loving and taking each day as it came was my coping strategy, not that I realised it at the time.

Whatever the rate of dementia prevalence is in the years ahead, it won’t change the fundamentals of living with dementia, and if cuts in social care services and our over-stretched NHS are anything to go by, whether the predictions of dementia prevalence are high or low doesn’t stop people being denied the care and support that they need. 

If anything we should to be less hung up on numbers and more focused on people. We also need to spend a lot more time and resources on those positive public health messages that are designed to keep people healthier for longer, and an awful lot more energy publicising and replicating some of the really great care and support mechanisms for dementia that a few people have access to but that many others do not.

Until next time...

You can follow me on Twitter: @bethyb1886

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Researching dementia

Last week statistics were released showing that during the last year 22,000 people took part in dementia research – a 60% rise - and that 10,000 people have signed up to Join Dementia Research.

Research isn’t a topic that I’ve written about extensively, which perhaps isn’t surprising given that I’m not a scientist or an academic. That doesn’t mean I have no interest in it, however. Aside from the very obvious personal feeling I have that I don’t want others to go through what my dad went through (particularly in the latter years of his dementia), I am an ambassador for dementia research charity BRACE, whose work I am constantly in awe of, and I write and speak extensively about the fact that, in reality, we actually know alarmingly little about dementia. 

This lack of knowledge has many causes, which include the historic lack of focus on dementia, the even greater lack of money put into dementia research in the past, and the sheer complexity that the many forms of dementia present to even the most scientific or academic brain. Studies have started and never produced results, and in terms of pharmaceuticals, drug trials have been abandoned due to unforeseen circumstances – for example drugs not producing the effects expected or unacceptable side-effects.

I have never been a person greatly influenced by the work of pharmaceuticals, although I do acknowledge that many people are supportive of the current (limited) drugs that are available and of course any new breakthroughs – like for example Eli Lilly’s Solanezumab drug announcement at the recent Alzheimer’s Association International Conference – are of course to be welcomed if indeed there is widespread benefit to be had for people with Alzheimer’s Disease in the future.

This is, however, such a tiny part of the overall picture. With so many different forms of dementia, and different nuances in how each person with a particular form of dementia experiences their symptoms, there is so much more that needs to be determined before we can honestly say that our understanding, and treatment for, the many different types of dementia has progressed to the point that we have reached for the many different types of cancer.

With that in mind, any increase in the numbers of research participants is extremely important, and I suspect is largely down to the profile dementia now has that it simply never had in the past. So what are the benefits of being involved in dementia research?

For people with dementia:

Many people I know who are living with dementia have actively sought to be involved in research. These individuals often describe involvement in research as an opportunity to feel useful, to be proactive after diagnosis and with the potential to make a difference to the lives of others now and in the future.

For families of people living with dementia:

Because a diagnosis of dementia impacts far and wide beyond the person with the diagnosis, many family members feel they want to do something that helps them to contribute to the wider understanding of dementia. Some people also view research as an opportunity broaden their own knowledge.

For society as a whole:

As dementia seeps into the public consciousness like never before, more individuals are learning about dementia and recognising that, as the numbers of people being diagnosed increases they, or someone they love, may also develop dementia in the future. To be able to help improve understanding and treatment is a powerful motivating factor.

So much of research really is about the future, and future-proofing health is often in the forefront of the minds of both researchers and participants, but I would sound a note of caution. While we think about improving health for the future, and ideally finding the treatments and potentially even cures for the different forms of dementia, we must never forget the people who are living with dementia NOW. 

Their needs are as important as our own need to avoid developing dementia in the future, and research into living well, lifestyle strategies, non-pharmacological therapies and care and support that focuses on improving quality of life is what is likely to benefit these individuals the most. I recall when my dad was alive, and particularly in the latter years of his dementia, the headlines about research ‘breakthroughs’ pretty much went over my head. They were utterly irrelevant for dad, who was my primary concern at that time, and although I don’t in any way dismiss genuine breakthroughs now, I have an equally strong sense that helping people in the  future doesn’t mean we neglect those living with dementia in the present.

Research for people living with dementia now, people living with dementia in the future, prevention of dementia and the many different aspects of treatment and care needs to be as broad as the participants signing up to participate in dementia research. That, for me, is the blueprint for a dementia research strategy that is befitting of the task ahead of us, and one that also does justice to the many people, like my dad, who have lived and died with dementia.

Until next time...

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Holiday season

August in the UK is traditionally seen as the holiday month. Apart from the fact that most families with school-age children are restricted to holidaying at this time of year due to education regulations, there seems to be a mass desire to ‘get away’ in what is meant to be the height of the UK summer.

With this holiday season in mind, I thought it would be apt to explore the idea of holidays, past and present, in the context of people who are living with dementia. Vacations are seen as one of the most positive and enriching aspects of life from childhood to retirement, but how do they fit with the stigmatisation of dementia?

People who are newly diagnosed:

One of the aspects of life that people often feel will have to end once they are diagnosed with dementia is going away on holiday. Holidays are frequently seen as the preserve of the young and people who are healthy and retired, while many people with dementia are subjected to Prescribed Disengagement™ (as described by Kate Swaffer, a lady living with dementia) upon receiving their diagnosis.

Of course we’re all different, and holidays aren’t for everyone. Certainly my dad, a man who never travelled beyond the UK and even then was reluctant to ever go to new places, would have viewed a holiday as an endurance rather than a pleasure, but if you’re a person who enjoys going on holiday a diagnosis of dementia isn’t a reason to stop doing what gives you pleasure for as long as you feel able to continue with that.

The challenges of change when you’re on holiday:

As much as a person with dementia and their loved one(s) might want to go away on holiday, there is often anxiety on both sides about how the vacation will work out. Routine is very important, indeed vital, for many people with dementia, and holidays are naturally a break with that, although depending on the type of holiday you choose you might still be able to keep some familiar routines.

Other concerns are often around travelling arrangements and time spent travelling, differences in living accommodation (layout/comfort/design), the geography of the local area and the availability of familiar foods. Sleep patterns can also be disturbed in unfamiliar environments, and changes in temperature/climate can be problematic.

To help avoid conflicts and upsets, it’s important to understand what each person on the holiday wants out of it and think about where you are going to go very carefully. Choosing a venue that is used to supporting people with dementia and their loved one(s) should help to minimise problems and give you the peace of mind to look forward to your holiday. 

Some suggestions of such venues are here: http://www.dementiaadventure.co.uk/adventures/venues (Please note this link is provided for information, and should not be seen as an endorsement of any particular venue or activity). For additional options, it’s always worth investigating assisted holidays for people with disabilities – it may not seem like an obvious internet search, but some companies that support people with physical disabilities may also have the ability or contacts to support people who are living with dementia.

'Respite' / carer breaks:

There is a perception of ‘respite’ for family carers that is characterised by the person with dementia going into care while their family carer(s) go away for a break. Whilst this may be a model that suits some families perfectly, it is important to recognise that other families want to do things differently. They don’t necessarily want to be separated from their loved one and instead want to be supported to go away as a family.

This is just another example of where a one-size-fits-all approach really doesn’t work, and the individual needs and wishes of families have to be explored and wherever possible supported and facilitated. Many of the holiday venues I’ve listed above do exactly this, and hopefully we’ll see many more examples in the future.

The cost:

Cost is a significant factor for most people when they are looking at taking a holiday, and many of us save for many months or even years to afford to go away. Such saving doesn’t always fit in with the unpredictability of dementia, however, and many people who are diagnosed feel an urgency to fulfil some of their travelling dreams while they are still at the height of their cognitive powers.

Other cost considerations when a person’s dementia is more advanced can be around paying for professional care, or taking a larger than usual family group on holiday so that relatives can take turns in providing more intensive care and support.

In addition, given that dementia care comes under the umbrella of social care, which in the UK is means tested, many people may simply not be able to afford to have a holiday because all of their income/savings have been spent on modifications to their home or professional care fees.

Reminiscing about holidays:

Even if health or financial factors prevent a person with dementia taking a holiday, it doesn’t mean that the many positive aspects associated with holidays have to be abandoned. Reliving past holidays through photographs, family videos, scenic pictures hung on the wall, exotic cuisine or music that is synonymous with vacations gone by can all help to engender a holiday spirit. Think too about textures and sounds - sand, rocks and wave sounds might help to prompt reminiscence about trips to the beach.

A few care homes I’ve visited have gone even further, creating beach ‘installations’ complete with deckchairs, sand and sea pictures, and some are regularly visited by the ice-cream van selling the traditional 99p cone with vanilla ice-cream.

Of course nothing will replace the excitement, discovery or relaxation many of us experience when we go away on holiday, but keeping memories alive when going away is no longer possible can still help to engender some of the feel-good factors associated with holidays.

Until next time...

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