Finding love again

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 love.

I finished my January 2019 blog with a quote that talked about how a person who is struggling to express themselves, perhaps because of their dementia, is:

“Ultimately looking for understanding, appreciation and love.”

Of course that could be said for all of us regardless of the circumstances surrounding our health, but a diagnosis of dementia brings the importance of love and expressing love into an even sharper focus, as I described in my 2014 blog, ‘Amour’:

“Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.”

But that isn’t to say it’s always easy to express love or feel love when dementia is part of life. Last year I met a lady who very candidly spoke about her relationship with her mother, who is living with dementia, saying that she found it very hard to love her mother now.

Many people might harshly judge this lady for a comment like that, but on further exploration it was clear it was a remark that came from a place of immense love and a longing for that love to be reciprocated. The lady felt bereft because of her perception that her mother didn’t love her, but when we reflected on her time with her mother, it became clear that she was missing very subtle signs of her mother’s love, purely because they weren’t the obvious expressions of it that she’d been used to her whole life.

This lady viewed the changes in her mother only through a negative lens. She spoke about her mother’s repetitive speech, her lack of interest in previous hobbies, how she no longer wanted to eat foods she’d always enjoyed and how she constantly walked, making her daughter feel that she just wanted to get away from her.

But we found a flip side to this. The repetitive speech was an opportunity for the lady to reinforce the information her mother needed, and that could come from a place of love if she realised the trust her mother was placing in her to provide that information in a calm and consistent way.

The lack of enthusiasm for previous hobbies could be interpreted as an opportunity to try new things, finding common interests that they could enjoy together, and likewise with trying new foods. We also talked about walking, and the joy that could be found in walking together, exploring the environment and taking notice of the details around them, something that is known to be very good for improving wellbeing.

Like many people, this daughter saw her mother’s walking through the negative concept of wandering (not a phrase I like or agree with), which is a topic I wrote about in my 2012 blog ‘Going Places’:

“Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in. It may be a world from their childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.” 

For this lady’s mother, walking was something she needed and wanted to do, not something to be in any way suppressed as her daughter thought it perhaps should be. Supporting someone you love to do something that they love is in itself an act of love. Not one with big declarations or fancy ribbons attached, but one that is far more meaningful when you consider that many people who are living with dementia and want to do things like walking are prevented, sometimes forcibly, from doing so.

I think, and hope, that I helped this lady to find a different perspective to the one of desolation and isolation that she was feeling. Accepting that dementia sometimes changes our perception of loving and being loved is a tough realisation, but it is one that provides a degree of peace, and sometimes even hope – hope that you can still have those moments of connection with the person you love, however fleeting those moments may be, and feel that surge of emotion that only love can give you.

As I said in my Amour blog:

“During those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through.”

Until next time...

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Living with dementia in a rural community

September 2017 saw the launch of the Dementia Action Alliance’s (DAA) ‘From Seldom Heard to Seen and Heard’ Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I’m a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilizing my extensive knowledge and experience of working with people who have a learning disability and dementia. I wrote about BAME communities in my October 2017 blog, and for this post, I want to think about the challenges for people with dementia who are living in rural communities.

It’s a topic close to my heart - I’ve always lived in rural areas, and currently live over 11 miles from my nearest town. My dad was a farmer with a passion for the countryside, and he fostered my love of rural life, nature and the environment from an early age.

But whilst I love rural living, I’m also well aware that it isn’t without its challenges. Although rural communities can often be amazing at pulling together and looking after their own, there is no doubt that many people can also be very isolated and lonely if they become ‘cut off’ or reclusive.

For a person developing dementia, particularly if they live alone, that can lead to numerous problems. My dad went ten years without a diagnosis, and whilst I would be the first to admit that there were many factors that contributed to that timescale, I do wonder if living miles from healthcare services made him someone who was ‘out of sight and out of mind’.

Dad’s local town was 9 miles away, and although he was on a bus route the services weren’t as frequent as in urban areas. During his 10 years without a diagnosis dad stopped driving which made him even more dependent, not only on public transport but on his family too. I didn’t learn to drive until after dad’s diagnosis, by which time he was living in a care home, so it wasn’t like I was much use on the transport front either.

Had dad received a timely diagnosis, and had services existed back then that he or I had wanted to access (groups and therapies for dad, or for me, carers services), our involvement would have been dependent upon us having suitable transport that got us to these services at the right time. For many people living in rural communities, these are sometimes problems that prove insurmountable.

Reflecting now, I also see how lucky we were that dad didn’t get into serious difficulties living surrounded by fields (the garden backed onto open farmland), ditches and streams whilst he was developing dementia. The countryside was very picturesque, but had dad decided to go out walking and then become unable to find his way home, it’s quite possible no one would have seen him, let alone found him, potentially until it was too late.

Urban areas tend to have more landmarks, in terms of buildings and points of interest. There are also many more CCTV cameras and members of the public who might see someone with dementia who has got lost whilst walking. Finding a person with dementia who is confused and disorientated in that environment is possibly easier than in the countryside.

My dad was living on the edge of a small village, so we weren’t completely cut off from civilisation, but many people living in rural areas may be far more isolated down a dirt track without another house in sight. If bad weather then hits the potential for difficulties or disasters becomes considerably greater.

Of course it isn’t just about hazards and problems. Many people living in rural areas benefit from cleaner air, more open spaces and opportunities to absorb themselves in outdoor pursuits that improve their wellbeing. Even being able to sit by a window and look out onto open fields and watch the animals and birds, enjoying how the changing seasons alter the natural landscape, is something many people in urban areas may crave.

Isolation and loneliness isn’t just reserved for individuals living in the countryside either. It’s often said that you can be surrounded by people in a town or city and yet still be the loneliest person in the world. Just because you have countless neighbours all around you, doesn’t mean anyone will actually knock on your door.

But I do firmly believe that people living with dementia in rural locations face some specific challenges, particularly around accessing services and support and remaining safe and well (although not resorting to being risk adverse), that require all of us to consider how we are reaching out to these individuals and communities and making our services and support accessible. Yes, some dementia friendly community work has happened in rural areas, but certainly not in all of them, or even the majority.

Where I live is currently undertaking a neighbourhood development plan survey, and one of the areas I’ve highlighted in the lack of retirement and extra care housing, and residential care services, for our ageing population. People who live in rural areas have every right to reside in the location of their choosing - they shouldn’t be forced to move to an urban area if they don’t want to just because their needs are changing and there is a lack of services and support in their locality.

Of course there are always challenges to find staff, and run health, social care and third sector services in rural areas that are sufficiently used that they remain viable, but as a country we need to become much more innovative about supporting people in every community, regardless of how rural they are, to lead the life they want, including when they are living with dementia.

Until next time...

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The failure of post-diagnosis support

It’s not often that the content of TV programmes stays with me, but the recent BBC ‘Hospital’ series, following the fortunes of patients and staff at Imperial Trust’s hospitals in London, and ‘Granddad, dementia and me’ that I wrote about last month, both fall into that category.

Documentaries can teach us a lot, and even allowing for the selective nature of TV editing and the luxury of being a passive viewer rather than a stressed subject with a camera pointing at you, I feel it’s important that the learning from these two programmes isn’t lost.

The third episode of ‘Hospital’ featured two gentlemen living with dementia. Firstly we were introduced to Carl:

Narrator: “75-year-old Carl has dementia. His family brought him to A&E after he became aggressive at home. Yesterday morning he walked out of the hospital and was missing for 13 hours. The police found him wandering the streets alone and brought him back to A&E.”

Dr Barbara Cleaver, Emergency Medicine Consultant: “Three people to look after him at the moment including security because he is in an unfamiliar environment, it’s noisy, it’s bright, there’s lots going on. I suspect that’s really playing into his underlying diagnosis and making things much worse for him.”

Narrator: “For his own safety, Carl is being held in room Q, the space reserved for psychiatric patients.”

My alternative commentary would be:

“Carl, a gentleman living with dementia, was missing his wife who for her own health needed a break from 24/7 unsupported caring. Carl, confused and frustrated that he couldn’t find his wife, lashed out at those around him through no fault of his own, and without the skills and support they needed, family members took Carl to a place they thought he would be safe. Carl, however, became disorientated in this alien environment and went to look for his wife for reassurance and familiarity.”

Later, we were introduced to Stanley:

Narrator: “85-year-old Stanley has vascular dementia. This is his 4th admission in three months. Around 25% medical patients treated annually by the Trust have dementia. They are accommodated in a specialist ward until their social care can be arranged.”

My alternative commentary would be:

“Stanley, poorly supported in the community, has had repeated inpatient stays. At present Stanley does not require acute medical treatment, and would undoubtedly have lived far better with his dementia had his family and social care been properly resourced to support Stanley from his diagnosis onwards.”

Were Carl and Stanley featured because their stories are somehow usual? Sadly I suspect quite the opposite. Carl and Stanley are the norm. The failure in post-diagnosis support for people living with dementia and their families is something I have written about countless times. Not only is it a disgrace that families end up in the situations faced by Carl and Stanley, it is also a complete false economy.

My dad was diagnosed 14 years ago. Since then we’ve had numerous dementia-related initiatives from different governments and significant investment into dementia education for healthcare professionals via Health Education England. And yet we still have:

·       People attending A&E because it’s the only place guaranteed to ‘do’ something for them when their family can’t cope with ‘aggression’ or the person has been found ‘wandering’ (not my choice of language)

·       People with dementia being placed in rooms intended for psychiatric patients (that are not remotely dementia friendly)

·       Medical and security staff seemingly untrained in supporting a person with dementia (and loads of stigmatizing language)

·       People remaining stuck in hospital because care packages are so difficult to arrange

·       Family carers at their wits end, wanting to care for their loved one but utterly unsupported

·       No signs of dementia friendly environments (in people's own homes or health/social care facilities)

 

·       No mention of some of the good work that has been done to help people in hospital, like 'This is me' and John's Campaign.

Add in what we saw in ‘Granddad, dementia and me’ where the gentleman featured who was living with dementia, Tom, was drugged and sectioned, and overall in both programmes precious little sign of any choice, control, empowerment, peer support, occupation or activity, life story work and other non-pharmacological treatments, positive behaviour support or, frankly, anything I would be proud of (beyond the outcome shown in Tom story) and I honestly question how much REAL progress has been made in the last 14 years.

By the time a person attends A&E, there have potentially been numerous red-flags that the family needed support. A dementia diagnosis in itself is the first of these. Once things get so out of control that the person is in hospital (which is one of the worst possible environments for a person with dementia - it will only increase the person's confusion and disorientation making them upset and/or angry), the effect on everyone involved isn’t favourable.

Some simple preventative advice and support could at best avoid, or at least significantly delay, a person ever ending up in a crisis situation. Why do we not educate families, at diagnosis and continually thereafter, about (in no particular order):

·       Making their home dementia friendly

·       Accessing peer support and empowerment

·       Occupation and activity - The myriad of different options to keep busy and how to access them

·       Collating and using life stories and other non-pharmacological therapies to support a person experiencing changed behaviour

·       Training: For the person with dementia and anyone in the family unit who wants it. Knowledge is power for many people. Knowing what is happening in the person’s brain, how those changes could affect the person and ways of providing optimal care and support (including self-care for the person with dementia)

·        Carer resilience - Ways of coping, identifying when you aren’t coping and sources of support when you aren’t coping (that actually exist and respond)

Instead, as episode three of ‘Hospital’ concluded, we learnt that Carl was now being cared for in an acute mental health unit and visited daily by his wife, and Stanley was settling in well to his care home. Would either of these gentlemen have chosen these two places of residence? I doubt it. And from the perspective of the tax payer, both are very expensive options (Stanley’s care home costs £1700 a week, plus because of his ‘complex needs’, an additional £2300 for one-to-one care. It is funded by NHS Continuing Healthcare. We never learn what Carl’s acute mental health bed costs).

Worst of all though, is the cost in personal anguish for these two gentleman and their families. We’ve only very briefly dipped into their stories, but they represent examples being replicated every day of how a diagnosis of dementia can needlessly lead to lives unravelling, all for the want of a holistic, long-term package of what is comparatively low-level post-diagnosis support.

 

Ask yourself: For a country aiming to be the best place in the world for people with dementia to live, is that the best we can do?

Until next time...

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The ‘F’ word that no one wants to hear

Most older people are frightened of having them, most relatives of those older people are equally concerned by them, and most health and social care services are under pressure to avoid those in their care having them. Falls really are the ‘F’ word that no-one wants to hear.

 

The fear of falling that older people have stems from a variety of reasons - the most notable include the likelihood of injury (possibly serious injury that could include hospitalization, operations and long-term rehab - which could include a prolonged spell of being bedbound and/or needing residential care) and the loss of independence and confidence that a fall often brings. Other psychological problems include embarrassment, feelings of becoming a burden to others, and ultimately isolation from potentially not being able to get out and about as you once did.

 

If a person has osteoporosis, a fall is a serious matter. Broken bones, when you already have a condition where your bones are weak, is clearly something to be avoided. Post-menopausal ladies are particularly susceptible to osteoporosis and the drug treatments currently available are controversial, with some people claiming that they actually increase the chances of brittle bones.

 

For the relatives of an older person, the implications of a loved one falling can be huge, not just from the point of view of being incredibly anxious for their wellbeing (particularly if they need an operation), but also because a bad fall could lead to a long-term caring role if it leaves your relative less independent. The desire to minimize falls can often leave families wanting to wrap their loved one in cotton wool, but that in itself could lead to an older relative wanting to take more chances just to prove what they can do.

 

Risk-aversion, however, is something most commonly associated with health and social care professionals, as I wrote about here. Their services are often judged on the amount of falls those in their care have, and since serious falls can also lead to death from other complications in very frail individuals, they are under immense pressure to minimize falls. 

 

I dislike bringing every health issue back to finances, but it is a well-known fact that falls cost the health service a lot of money – in excess of £2billion a year.  Add in the pain, worry and potential long-term care implications and you would have a much higher figure (if indeed you could even put a cost on those). Despite this my dad, a gentleman who had multiple falls during the time when he was compelled to walk due to his dementia, was only ever given hip protectors and a crash mat by his bed to help minimize his chances of breaking bones. Possibly a hard-hat might have been more use on the occasion when he burst a blood vessel in his head from a fall and required staples in A&E.

 

Meanwhile, if you are an older person who is already in hospital, don't assume you are necessarily safe from falling. I recently heard about an internal study on falls that was conducted by an NHS Trust providing older people's inpatient mental health services. Amongst the stats they collected, they discovered that the people falling in their care were on average being given 4-12 different medications.

 

More worryingly, despite discovering this (which personally I don't find surprising), they didn't present either an explanation for such a significant level of polypharmacy or a proposal for how they were going to tackle it. Chances are little was really understood about these multiple drug interactions, and it was going to take a pioneering medical and pharmacy team to enable them to systematically review each patient and reduce their medications.

 

Although required to prescribe less antipsychotics in the treatment of people with dementia, medics often use other drugs such as antidepressants or sleeping tablets to make patients more 'compliant'. However, the effects on their cognition and ability to be alert enough to move around safely is likely to be severely impaired, and that is to say nothing of the side-effects and interactions from all of their other meds.

 

In this Trust, and indeed any health and social care service where older people are having falls, I would like to see a complete prescription policy review, environmental changes (for people with dementia), regular OT input that helps people with exercises (including for balance), and investment into stimulation and boredom-reducing activity. Alongside this needs to be sensory assessments (to check for eyesight problems that could affect a person’s ability to see where they are going, or hearing problems affecting balance), assessments for other medical conditions that could lead to an increased risk of falls, careful consideration of foot health and suitability of footwear, and appropriate provision of walking aids as required. Last, but by no means least, there must be safe staffing levels in health and social care environments.

 

It cannot be overstated just how important safe staffing levels are. Firstly they ensure adequate supervision, which whilst it won't prevent every fall will stop some and enable learning and change to happen to promote further falls reduction. Secondly they will provide support to people who want to (and need to) move around. Mobility is vital but it often requires support and for that to be available in a timely fashion, for example if a person wants to go to the loo urgently. 

 

Imagine being an older person needing the loo, asking for help to get to the loo, that help not being forthcoming, getting desperate and trying to go on your own, falling and then soiling yourself - a more undignified scenario you really cannot contemplate. The opposite outcome is a health or care professional coming to assist you on your first request, helping you to the loo, waiting for you (not returning 30 minutes later when you've got so fed up of waiting you've tried to move and fallen) and then helping you to get to wherever you need to go.

 

We have to elevate falls prevention (without becoming overtly risk adverse) into the priority it clearly is. NICE issued this guidance and there is plenty more well-researched literature, including this from the Kings Fund. We know falls are bad news for everyone involved, but for the person falling most of all. We talk extensively about the dignity agenda in the health and social care of older people - preserving that must include proactive falls reduction. The nature of the human spirit is such that we will never prevent every fall, and in trying to could stifle people's liberty in a totally unacceptable way, but the simple measures that are possible must be implemented.

 

Until next time...

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On the move

For everyone who is fortunate enough to be able to move around independently, I would estimate that most take that for granted. Likewise, I would suggest that one of the key ideas people have about ageing is that immobility is likely to come hand in hand with getting older.

Along with wearing dentures, losing your driving licence, becoming incontinent and living with dementia, immobility is right up there in most people’s vision of what ‘being old’ is like. It’s a hugely stigmatised view of course, since many people live a very long life without encountering any of these problems. Indeed I once knew a lady in her 90’s who was still driving her little Mini around, was perfectly able to get to the toilet when she required it, still had all her own teeth, and most definitely didn’t have dementia.

Nevertheless, the image of the older person with their walking stick or zimmer frame looms large in most people’s vision of ageing and indeed of living with dementia. It is worth pointing out, however, that I’ve known many people who never really had mobility problems during their years with dementia, and only became confided to bed when they became ill with an infection that they died from shortly afterwards.

Supporting mobility is a key aspect of helping a person to live well with dementia. The exercise is good for their general health, the independence is good for their mind, and mobility ensures a sense of normality is retained when many other aspects of their life may be changing. That’s not to say that being mobile doesn’t present risks, particularly around the desire to walk a lot (as I wrote about here) and the potential for falls and accidents that can result in broken bones, cuts and bruises. All of these can take a longer to heal for an older person, and if a hip is seriously broken it can be a threat to someone’s life.

These risk factors often lead to worries about a person’s safety and security if their mobility is actively encouraged, but we shouldn’t become too risk adverse. Mobility is vital part of a person’s life that as families and professionals we should make sure we support. Keeping people seated or in bed simply to protect them from the potential for injury is likely to do a huge amount of harm to their physical and mental wellbeing, and even more so if restraints are used.

Seeing immobility as some kind of cosy cotton wool world is totally inaccurate. If someone becomes immobile it produces a whole range of added problems, most notably around pressure sores and increased risk of infections. My father had far more chest infections when he became immobile, and his GP was firmly of the belief that his lack of movement was contributing to his inability to effectively remove the secretions from his airways. Imagine being unwell with chest, bladder or stomach problems and unable to move – a fairly unpleasant thought for anyone to contemplate.

Maintaining an individual’s mobility when they are living with dementia does, however, produce challenges. If a person becomes unsteady on their feet and requires a walking aid, trying to support them to learn how to use that correctly can be very difficult. Keeping people mobile if they are beginning to struggle with independent mobility also requires a huge amount of commitment from professionals and/or family members.

In care settings, including hospitals, you need high staffing levels to ensure that there is enough support to help people to move around. Movement often takes time and patience and cannot be rushed. In almost every care setting there are never enough physiotherapists, occupational therapists and indeed supporting care staff who are ready, willing and able to help someone to walk down the corridor, go to the loo or indeed venture further.

Even if an individual does eventually become immobile, that doesn’t mean that they should be dumped in a room and left there all day, or excluded from events or activities simply because no one has time to give them the opportunity to move. One of the big problems in my dad’s care home was always the lack of wheelchairs; you would often have to beg and borrow in order to find a wheelchair for him to be moved from his room. It would be utterly unacceptable for someone to not have clean clothes or food in a care home, but apparently it’s perfectly acceptable to restrict their chance to move around just because they are unable to walk anymore.

Immobility has huge implications for a person’s quality of life. It can affect the opportunities they have for engagement, fun, new experiences and environments, and the pursuit of hobbies and interests. It is also likely to affect emotions, often producing frustration, anger or boredom. Indeed, whenever you feel someone who is immobile is producing ‘challenging behaviour’ ask yourself how you might feel in their circumstances. Some people can even lose the will to live through immobility.

For many years the Paralympic movement has shown us what people can do when they are restricted by mobility or movement (see my blog on the positive approach of Paralympians), yet we often see older people, people living in care homes and particularly people with dementia, assume immobility is a natural part of their life and simply give up on helping them to maintain their mobility. I’m not suggesting our older generations are likely to want to become Olympians (well you never know!), but they should be given every opportunity to keep moving, however much they can and for as long as they can. After all, wouldn’t you want the same chance afforded to you?

Until next time...

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Going places

For most of us, travelling is part of our everyday routine. From going to work, looking after our families, shopping or enjoying activities, getting from A to B is just another challenge along the way. Travelling, whether it be close to home or far away, is also associated with pleasure - we do it to see something familiar and nostalgic, or experience the amazing for the first time. You may travel to enjoy a change in climate, experience a different pace of life, tackle an adventure or simply find rest and relaxation.

All of the above are perfectly valid reasons to move yourself from one location to another, and that does not change when someone has dementia. Interestingly my father was never a great traveller - indeed he never left the UK his whole life - and yet when he went into care as a result of his dementia, he became one of the home’s most extensive ‘travellers’, or as it was termed in those days, ‘a wanderer’.

He would walk endlessly along the corridors of his nursing home, and although it kept him fit it brought problems too. Dad was often reluctant to rest during mealtimes, and even when he was persuaded to sit to eat or drink, he would often nag me to ‘get on with it’, so restless was he to keep moving. As he became more unsteady on his feet (partly due to his dementia, but mostly because of the long-standing knee problem that he had), he became prone to falling, resulting in numerous trips to hospital for wounds to be stitched up.

Still he kept walking, undeterred, with an increasingly unbalanced motion until one day, without warning, his walking stopped and never resumed. Efforts were made to restore his mobility, but his knee could no longer support him, and due to his dementia he was unsuitable for knee replacement surgery. So my dad was no longer ‘a wanderer’. Except in my mind he never was.

Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in. It may be a world from their childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.

When someone with dementia walks constantly, it may be as a result of seeking, finding, expecting or hoping to see a person, place or object, or to get away from something. It may also be that they feel too hot or too cold in their current environment, they may be looking for the toilet or to make a drink or a meal, they may be bored, wanting to escape from a particular smell or noise, confused about the time of day, feeling energetic or needing to try and walk off a pain or discomfort. You may never discover what their reason is, or the person with dementia may go into great detail about what they are doing. It may prove to be a phase, or a physical problem, like in my father’s case, may end it.

For my dad, much of his walking was harking back to his life as a farmer and a gardener. Walking the fields, rounding up the cattle, sowing crops, ploughing and harvesting. Another man in the care home had also been a farmer, and if anything he walked even more than my dad. A female resident had very different reasons. She had been an executive and travelled extensively abroad for both business and pleasure, with a particular love of dancing the night away on cruise ships. Another lady had been a busy wife and mother all of her life, and was used to being on her feet cleaning, tidying, cooking and running around after her children.

Sometimes it can be important to find ways to persuade someone who walks constantly to take a break. If they lose too much energy they can become prone to falls, and walking constantly at night when they would normally be sleeping can also be dangerous as tiredness develops. Eating and drinking whilst on the move is not advised, especially in people who need more time to chew and swallow their food to avoid choking. Constant walking can also bring those who are doing it into contact with others who may find their movement objectionable.

Building those break times into the walking routine means excluding a physical reason why the person with dementia is walking (ie: needing the toilet), and then finding an occupation for them that either ties in with their reason for walking (if you are able to discover what that is) or involves something that captivates their imagination, thus temporarily overriding their compulsion to walk. Never fall into the trap of viewing their walking as unnecessary though. Re-read the first paragraph of this blog post and for every reason you or I have to travel, remember that in the world of someone with dementia, they may have those exact same reasons too.

Until next time...

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