Supporting a person with anxiety

Anxiety is commonly mentioned as one of a raft of symptoms linked to the development and progression of dementia. It is thought that dementia can both exacerbate anxiety in those who have a history of being anxious, and also bring about anxiety in people who were previously never known to be anxious. In short, anxiety and dementia are often inextricably linked.

What interests me when thinking about anxiety and dementia is how the actions of those individuals around a person with dementia may, or may not, contribute to the promotion of anxiety in the person who is living with dementia. In my opinion, a common mistake when thinking about the manifestation of many symptoms of dementia is that they all exclusively originate as a result of the damage that the person’s brain is going through, when other factors could also contribute or at very least enhance many symptoms of dementia.

As I’m not a scientist, I’m not about to align this theory with findings from some extensive research study I’ve undertaken. My viewpoints are based on personal experiences with my dad and other people who are living with dementia, observations made in my personal and professional life, and good old fashioned common sense, which I often feel is severely lacking in much of what is thought and taught in relation to dementia.

The difficulty with anxiety is that it has a tendency to set in motion a snowball effect. Very early on, when family members start to notice changes in their loved one, they may well become anxious. The mind has a habit of fast-forwarding to worst case scenarios at the onset of any type of health-related concern that could have long term, irreparable consequences. Anxiety can be difficult to hide, even at this juncture, and could therefore affect the person who may, or may not, be developing dementia.

Meanwhile, if the person who is potentially developing dementia picks up on either their family’s anxiety, or begins to feel their own anxiety at disconcerting events - like forgetting names, the location of places or objects, dates and times, or struggling to maintain their daily routine - then anxiety is already doing its unpleasant work and putting everyone on edge.

Some people cope with anxiety by trying to prove that they can do what is making them anxious, which for a person with dementia may only make them more anxious and prone to what they might feel is ‘making a mistake’. Other people cope by hiding away from what is making them anxious, which can result in not participating in things that they normally would participate in which is then seen as withdrawal, another symptom of dementia. 

In almost any scenario related to anxiety and dementia, there is also the possibility for elements of depression to set in, which again are very counterproductive. Bringing all this together into the diagnostic process for dementia can result in a fairly gloomy prediction of what post-diagnostic life is likely to entail. This is perhaps best summed up by Kate Swaffer, a lady living with dementia, who has trademarked the term ‘Prescribed Disengagement’. Anyone receiving that type of ‘treatment’ is bound to feel lots of negative emotions, including anxiety.

Anxiety isn’t just linked to our mental processes either. It can manifest itself in many unpleasant physical ways, like loss of appetite, nausea, stomach pains, diarrhoea or vomiting, and through outbreaks of spots, itchy or sweaty skin, headaches, shortness of breath and exacerbation of a wide range of pre-existing conditions. Quite a few of these physical signs can also go towards contributing to a fairly negative assessment of a person’s prognosis in relation to dementia.

Even if anxiety doesn’t bite as a person is developing dementia, it may strike later on, in fact anxiety is often seen as a contributing factor to ‘challenging behaviour’, or as I prefer to describe it, unmet needs. My dad had problems with anxiety during periods in hospital, an environment that heightened his confusion and made him naturally anxious. Equally, in one my dad’s care homes, I distinctly remember a lady who had days of pacing the corridors looking exceptionally anxious and believing she had killed somebody.

The problem with anxiety, whether you have dementia or not, is that it is rarely rational. Add in the unpredictability of dementia and it makes anxiety much more difficult to cope with. If people around the person with dementia are also anxious, that only makes matters worse. So for example, individuals around a person with dementia might: 

·        Be unsure of how to speak to the person or react to something that they are saying – see my blog post 'Talking the talk' for some help and advice.

·        Be fearful of what a person with dementia might do – this goes back to the way in which ‘challenging behaviour’ is viewed. See my blog post 'Fear factor' for an exploration of fear and dementia.

·        Feel out of their depth or overwhelmed at the prospect of caring for or supporting a person with dementia – this is where training becomes so important

If you’re experiencing any of these feelings or situations, then any anxiety you’re going through is likely to be pretty transparent and therefore obvious to the person with dementia. It’s completely wrong to assume that just because a person’s dementia may have advanced to a point where there are significant problems with communication, or communication is non-existent, that the person with dementia doesn’t pick up on the words, actions, emotions and feelings of those around them – my belief is that the ability to sense how others are feeling remains with a person until the end of their life.

 

Helping a person with dementia to feel less anxious is about calm reassurance, and putting your feelings to one side in order to focus on the person with dementia, their needs, and how you can best support them. This will never be achieved if you’re an anxious wreck. If you are a person who feels out of their depth through lack of knowledge, ensure you plug those gaps through whatever means are available to you. 

 

If your anxiety is rooted more in fearfulness of what the person with dementia might do, coping with this is about trying to understand the world from the perspective of the person with dementia. What is happening around them, either with other people or the environment, that could affect how they react, and what could you do to make them feel more reassured?

 

If you’re a family member who is unwittingly projecting your anxiety about the future onto your loved one, take a step back and look at whether this is helpful for either of you. Your own health will undoubtedly suffer as a result of this type of anxiety, and I’ve already covered how negatively it may affect your loved one.

 

Without wishing to in any way hide from the realities of how dementia progresses, I think it’s important to remember to live in the moment, focus on what you have in that moment and any changes, however small or apparently insignificant, that you could make to enhance that moment. This is positive action that should help to relieve both your own anxiety and any anxiety the person with dementia has either picked up from you or is feeling independently of you.

 

Sadly there is no magic solution to anxiety in dementia care, but empathy, compassion, positivity, and being both person-centred in your approach and living in the moment are ways in which temporary and sometimes permanent relief can be found for all concerned.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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A moving experience

Moving into a new home is always stressful. I spent most of 2014 trying to move house, and I can testify to why it is generally considered to be one of the most stressful life events, alongside bereavement, divorce, major illness and losing your job.

Fortunately, at the end of our very protracted move was a lovely new home, and even unpacking became strangely exciting – the thrill of finding new places to keep treasured possessions. Some items had to be given to charity shops, but the vast majority of the things that we have accumulated over the years came with us. From the day we moved in we were able to close our front door to peace and quiet, our own space, our own choices of food and entertainment and a life of domesticity that is exactly how we want it to be.

There is a another kind of moving house, though, that is altogether different. A move that is more traumatic than most and yet remains shrouded in stigma: moving into a care home.

It’s the kind of move that is often not of the person’s choosing (although sometimes it is), where your personal ‘front door’ is just your bedroom door, where peace and quiet and sometimes even privacy are at a premium, where you live in extremely close proximity to numerous other people, and where complete personal choice around food, entertainment and daily life isn’t the norm for everyone. Perhaps even more significantly though, it is a move that doesn’t involve packing up every item you have accumulated over the years, but instead forces you to choose a select group of possessions – only as much as will fit into your bedroom.

As if the stress of the move itself isn’t enough, a move into a care home often also brings with it elements of those other most stressful life events for either the person or their immediate family.

·       Bereavement:  As I wrote about in my blog post ‘Decisions, decisions’, care homes are perceived by some people as being ‘God’s Waiting Room’. I vividly remember in one of my dad’s care homes, a new resident arriving on the morning when a much loved resident had just passed away after a short illness. Although the new resident’s arrival had been planned for some time and their room was in a different part of the home, there was something very thought-provoking for that family: they were settling their loved one in as the undertakers were arriving to collect the deceased. If nothing else, it reminds you of the fragility of life. 

·       Divorce: For some couples who have been together for most of their lives, the day one of them needs to move into a care home and the other remains in the family home is one of unspeakable heartbreak. In some ways it could be considered even more upsetting than divorce because it is almost always a decision forced upon the couple, where neither wants it to happen and in any other circumstances neither would ever instigate it. No matter how many hours you go on to spend in that care home with your partner, you no longer live together:  your bed at night and your table for breakfast in the morning are now just for one.

·       Major illness: This is one of the main reasons a loved one moves into a care home, and it is often the fact that that illness has progressed that makes the move necessary, certainly in the case of a person who is living with dementia. For many families this can also go back to the point about bereavement, with many relatives feeling a huge sense of loss.

·       Losing your job: If you’ve been caring for a loved one who now needs specialist residential care, or indeed you can no longer cope as a carer, your loved one’s move into a care home - however much it may be needed - will permanently alter your way of life. You effectively lose your job as their primary carer overnight. For some people that may be a huge relief, but for many others it can leave them with feelings of hopelessness, lack of purpose and huge anxiety about how their loved one is being cared for in the care home.

Taking all of that into account, it puts the stress of the average house move - however stressful you think it is - into context. Moving into a care home isn’t just about changing your physical environment and leaving behind many of the items you have been surrounded with over the years; it also changes relationships and has an emotional element to it that you only really appreciate once you find yourself in that situation.

 

In many ways, I had that emotional toll softened by the fact that for the 3 moves my dad had into 3 different care homes over a 9 year period, each one meant a release from hospital, which was an infinitely more impersonal, regimented and clinical environment than any of those 3 care homes were. Had moving into a care home meant dad walking out of the family home, getting into a car and us driving him to a care home, it would have been far more emotionally difficult.

 

In my dad’s case the first move into a residential care home was possibly the most upsetting for him and for us – it came following a decision by dad’s care team that he couldn’t return home from hospital as he was considered at that time to be a danger to himself and others. The upset, however, was largely because of a fear of the unknown. We certainly weren’t sorry he was leaving hospital, and neither was dad.

 

The second move came after another spell in hospital, only this time dad had been there 3 months and lost half of his body weight. We just desperately wanted him to be in a more homely environment and be properly fed – it may sound a very basic aspiration but believe me, we were truly at our wits end with hospital care. The third move came at a time when dad was near the end of his life, and this time our desperation was for him not to die in hospital but instead to be somewhere as close to a home from home as possible.

 

And that’s the point, care homes really can be a lovely home from home if you are fortunate to find a good care home; a place where your loved one is happy and where together you make new friends that help you celebrate the happy times and comfort you in the sad ones. There are lots of negative stereotypes about what motivates families whose loved ones move into care homes, but being part of a care home community truly can be an enriching experience and, even if you are only an occasional visitor, it can be ‘Time well spent’.

 

For anyone feeling anxious about the impending move of a loved one into a care home, or indeed is feeling the emotional fallout (particularly guilt) after such a move, this Facebook status update from a lovely lady whose mum has just moved into a care home will hopefully make you smile as much as it made me smile when I read it:

 

“Just love the fact that I turn up to take mum out today and she tells me she can't because her friends will miss her, and then tells me to go home because she's busy”

 

Until next time...

You can follow me on Twitter: @bethyb1886

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