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Quite the best thing in my experience you can do for someone living with dementia is spend time with them. Even if they’re difficult or completely uncommunicative.Being left alone with the confusion which increases with frightening force is the biggest challenge they face. I am convinced that the more time you can spend with them, the slower their cognitive powers deteriorate. I was struck by the speed of decline in my own father after his stroke when, with great reluctance, we felt that he needed to be admitted to a care home. I don’t believe it was just the stroke that was to blame. The isolation from the last links of familiarity and living as part of either a couple or family set the seal on his state of mind.

My father was a brave man who had faced numerous daunting difficulties in his life and conquered them. So, the look in his eyes when the dementia was blocking the connections in his mind told me how scared he was by the condition. However, he never gave way to panic or anger. He just calmly, though persistently, asked why it should be that he couldn’t remember what he was supposed to be doing (this in the context of ‘helping’. He could remember that I was his daughter. That was enough of a starting point: I was touched by how he always seemed to feel that he ought to be doing things to help me in one way or another). When people say that dementia can exaggerate (as well as distort) a person’s personality, I would agree. I was lucky in that my dad was the kindest human being I have ever known. I realise that this is not the experience of every relative. Whilst accepting the fact that he was living with me in the here and now, the next question he wanted answered was where he was. I would tell him the town and he would reply that he knew that perfectly well. The subtext was of course, how he had got there?  Crisis point was reached one day when I was unwise enough to have a lie-in until 8 o’clock on a Sunday morning. By the time I got downstairs, Dad, who slept on the ground floor, had called an ambulance, thinking that I must have had some terrible accident and, being unable, due to his broken hip, to climb the stairs to check on me, had gone into emergency mode given that it was so late in the day. The crunch came when he was asked for his address and, of course, he couldn’t answer. It was an action that had a logic shaped by his caring personality. He felt that he was still part of the family, with the responsibilities that went with that.

Whether or not the person with the condition lives with you, these are my recommendations for shared activities. You will, of course, note that most of them involve time together – the most precious thing you can gift to them. And keep communicating with them throughout. Just because they may not be responding to your stream of chatter, does not necessarily mean that it’s passing them by. Sometimes it was striking how Dad would repeat back a word or phrase of mine later which had struck him for one reason or another. The most obvious option for you, depending on the stage of the disease, and also what sort of a day they are having, is a day out. I would recommend that you start by planning this around having an easy exit. Perhaps a nice afternoon tea in a garden (sadly, tea gardens are increasingly rare) or open-air concert where your party can leave quickly and without fuss if need be.

It’s all much easier in the summer.  My father very much enjoyed a walk along the seafront which I heartily recommend if you’re lucky enough live near one. There is, of course, something  timeless about ice cream vans, beach shops, naughty dogs and excited children with everyone happy and a lovely sea view. The concept of time (as opposed to time of day) is the enemy of the person with dementia.

At other times of the year, Dad enjoyed going round the garden centre which just so happened to have a nice Christmas ‘grotto’. I well remember this festive expedition. It just happened to coincide with a good day, where he was almost completely normal. For that marvellous day, I got my dad back, chatting animatedly, speculating on cars, routes and plans for the future. What a lovely Christmas present that was.

Dad enjoyed a country show, particularly for its silver band. I also remember taking him to an air show which was good for one who had watched the Battle of Britain as a child, and he was thrilled by the appearance of a Hurricane and a Lancaster bomber. A major consideration to be aware of in the planning stage is of course, is the likelihood of loud noises which can be very upsetting. Sporting events should be treated warily, especially those where aggression is possible or likely. It could quickly turn into a nightmare.

Games are a godsend though a lack of co-ordination can be frustrating. Crazy or clock golf is my top suggestion. For indoors, the board games they played as a child can be a way of having a connection with younger family members.  It can be surprising how well some dementia patients remember obscure rules! You can try jigsaws though these can be hard for many where spatial awareness is a major challenge. I have nothing but praise for chess too. My father was able to beat my son at it, right up until a very short time before his death.

Singing and how it can unlock people whose speech has gone has been well documented. One of the nicest memories I have of my time working as a care home hostess was during an afternoon visit where three generations of a family were part-singing a selection of the patient’s favourite songs and, yes, she was joining in with huge enjoyment. You might also try church if you have an understanding vicar. This will depend on how keen and regular a church goer the patient was in their younger days; the days which they are likeliest to remember.

Old hobbies are great for the early stages of the condition. Gardening and walking being two of the most beneficial. Without annoying them, try to encourage lots of arm movement. I got Dad to remember the sort of Swedish drill he’d leant as a young boy. Beware of the hazards of cooking and needlework, though component tasks like rolling out pastry, mixing, beating or perhaps icing a cake could be considered. I haven’t tried crochet but I guess it might work for some.

As a full-time carer, you will need downtime, even if it’s just a few precious minutes, and the television can be as good a friend to you as for the harried young mother needing the babysitter box in the corner, or screen on the wall these days. Like the mother, you don’t need to feel guilt and there will no question of jeopardizing their development. My advice is to beware of action films (even former favourites). These can be frightening as complicated plots or unobvious motivation is hard for a person with dementia to follow and violence can rock their equilibrium and/or wellbeing. My father enjoyed watching programmes involving gentle skills such as painting or antique restoration, travel shows, particularly about places he’d visited in years gone by. The Fred Dibnah steam train programmes were particularly enjoyed. That said, I’m painfully aware that in care homes, the tv is often on constantly and indiscriminately as something of a pacifier.

Reading matter too for former keen readers, may need some thought. Adult fiction, rather like TV drama, can be confusing. It brought my dad a lot of pleasure to read some of the children’s books he’d loved as a child and the later ones which he’d read to me. Simple magazine articles of things they enjoy may work, or perhaps a collection of well-known or well-remembered encyclopaedic facts – making everything concrete, not abstract. Presenting Dad with Arthur Mee’s Book of Everlasting Things was a great hit. Short extracts are good and may bring longer ones to their mind.

 Dad missed out on the British animal-loving gene. He was indifferent to them. Perhaps that was why, when he first moved in with us, he was openly hostile to the dog. He viewed her as a bother to me, particularly as she demands long walks. But helping to care for an animal can have huge benefits, not least for the person him or herself. I believe it tunes in to their essential humanity. There are plenty of cuddly and/or robotic animals to be seen in the better care homes which can offer huge comfort.

Best by far, in my opinion, are encounters (regular if possible) with the family and the different generations within that family. I remember during the moderately early stages of Dad’s dementia, when I was unavoidably delayed getting home one evening and had to instruct my teenagers to look after him. When I – panicked – finally got in, I was relieved and astounded to find that, far from having had what they would term  a ‘mare looking after him, my children’s grandfather had risen to the occasion and had sourced from the fridge and cooked a hearty supper of scrambled eggs on toast for everybody (without burning the toast as my children would have been quite likely to have done)! Talking about family members, and, if you can and have the time, putting together a memory book (or having one written) will be popular and keep them rooted in reality. Dad and I spent many hours poring over old family photograph albums and today’s technology makes it so much easier to create such memory books and reproduce them complete with appropriate photographs which, of course, you can edit along the way. It’s been a revelation, sharpening features and adjusting colour, exposure etc and putting them into scans. I learned a lot about the family which I didn’t previously know during these chats which, I think, boosted his confidence just as it stimulated long-term memory.

And as they progress, and things become more difficult? It’s still worth trying to help them revive old skills. My father retained his cadet corps boot polishing and Hamleys Export Department packing and packaging skills throughout his life.

Time spent in nature is golden time. Even if it’s a little chilly and they’re not terribly mobile, I would recommend even just a little time spent outdoors (well wrapped up) in all but the coldest or wettest weather. Sitting in the garden was a joy to my father and it was my pleasure to grow things which he could reach as well as colour and planting combinations which would delight his eye and sense of smell. The seasons and the time of day are of huge significance to those with dementia as it grants time and order to their uncertain and scary world. Who wouldn’t after all, draw delight from a winter bird table placed near a window?

 In many ways, I feel, dementia cuts through the nonsense of our daily lives, leaving an appreciation of the things which really and truly do matter, not just to those with the disease but to all of us.

Another great communication tool: touch

One of the huge issues that dementia patients have to live with is isolation. They are locked out of the world without a key to re-enter it. Imagine the fear and despair that would cause you.

Before he came to live with us, my father had some serious health problems and spent a nightmarish spell in and out (mainly in) hospital. We had the horrible but not uncommon problem of the hospital being several hours’ drive away. When Dad finally emerged after a period of rehabilitation, he was certainly not his old self. He was quieter, more inclined to be fatigued and much less mobile. Given his near-death health problems and recent bereavement, this was unsurprising to us. ‘Give him time’ we all agreed. We were all simply thankful to have him safe and amongst us his family after a worrying and thoroughly unsatisfactory final few months on his own being visited by Adult Social Services. In fairness, they probably did not have the time or know him well enough to address the health problems that were brewing and which finally and savagely attacked him.

They were there, those two warning precursors of cognitive impairment; the quietness and the ‘not being quite themselves’. He was still perfectly able to function mentally for those first six months at least. Dad continued to scour the newspapers as he had all his life and discuss the wider world. He was on top of his personal affairs and day-to-day living. It was just that he took a less active role. When I think back, he rarely initiated conversations or bounced ideas in the way that he used to. I filed it in the drawer labelled ‘Old Age.’ For some reason, it never occurred to me to question the contrast with my mother, who had been four years older than Dad and yet had remained ‘on point’ and entirely herself right up to her last breath.

Another major challenging which can be life-changing for those with or developing dementia was Hospital. The lack of human contact, the absence of the familiar, the day-to-day continuum is daunting enough to most of us but to those fomenting dementia it is nothing short of disastrous. On the occasions when he was kept in for one reason or another, my heart sank and I was wracked with anguish for him and for other dementia sufferers there in that environment; busy, overflowing with strangers, intensely lonely and, of course, offering no real clue as why they are there. I have noticed many dementia patients becoming extremely anxious in places and situations where there is a lot of activity, many of them feeling somehow guilty and needing to join in and help somehow.

 One of the most poignant memories of my father – a great conversationalist and witty raconteur – is of some of the mealtimes after he had joined us. Used to ‘holding forth’ and delivering a great collection of anecdotes (by no means all familiar) there was now inevitably a different dynamic, given the fact that he was not at his own table. Dementia or not, this was potentially a difficult situation. Gamely (and politely), he would try to make interesting conversation, but the rapid-fire inter-teenager talk soon threw him and I could see him begin to lose confidence. He had enjoyed this from his own children and thrown himself into it all with gusto. But the grandchildren and the knowledge that he was no longer in charge was a bridge too far. There is a point when they know they are not adding to the general wisdom or entertainment but are unable to formulate any reason for this. He began to make self-deprecatory remarks and pronounce himself ‘bad company’ and make his excuses and leave the table. Sometimes he would begin a topic or story and then trail off. I knew there were things going through his head, but he self-censored or was not able to articulate them.

Teenagers, wrapped as they are in their world and with little patience for older generations, are probably not the best company for those beginning their journey towards dementia. It is a different matter once they understand. Children, of course, are generally enjoyed by people with dementia as, so often the person is able to recall his or her own childhood or large chunks of it brilliantly. It takes management – on both sides – and this is something I did not have the experience to achieve for him at the time, while desperately wanting the children to slow up, listen and humour him a little, while at the same time being able to explain more fully to my father. As time went on, they became exasperated by his apparently coughing a lot during meals. I mentioned this to various medical professionals who issued prescriptions, but no one mentioned dysphagia or its association with dementia. If only! Eventually the well-loved voice falls silent and, to me, this is one of the cruellest blows the disease deals out.

So, what can you do?  The answer is you build them up again. You offer them comfort. You actively defuse the feelings of being overwhelmed which affect so many living with the condition. As time went on, I began to see this with Dad, especially on his ‘bad days’ (and they do so vary according to the individual’s biorhythms and also according to the season or time of day).

You prompt them. Rather like a comic double-act, you, as the ‘straight guy’, set them up. You ‘forget’ some incident or person from that section of the past which you’re confident they’ll recall but, remember, avoid asking questions or dealing in abstract concepts – keep it ‘concrete’. See if they remember them. Make it current if you can, as though it were happening now and invite a conclusion or solution that you think the patient will be able to supply. Think pets, houses, gardens, cars. Think of their physical characteristics and descriptions.

One of the advantages to nursing someone very close to you is that you know their triggers: their real enthusiasms, aversions, or the stories behind certain things. I found myself playacting. If you haven’t read the fantastic and ground-breaking book Contented Dementia by Oliver James, then this is the moment you need to, as I wish I had. But then, I wish I had realised what was happening to Dad. Luckily, I could do this (to a degree) instinctively. I remember opening the window and listening theatrically. Dad took the bait.

“What can you hear out there, love?” he asked.

“The cuckoo,” I replied, knowing well that it was his favourite bird and associated with a number of stories surrounding the first home he remembered. It worked and he was off, telling them all anew.

Or another effective tactic is inviting them to demonstrate a practical skill or solve a simple problem that you can be confident is within their power of solution.

“Any idea of how I can make this into a parcel?” I asked Dad one day, knowing that he would be able to remember working in the Despatch department of both Hamleys and the Army & Navy stores. He was delighted and did a fantastic job.

Emotion (especially empathy) can be difficult for people with dementia. It falls into the Abstract and is probably something you want to steer them away from although positivity on your part is great (essential) for both parties. Good, simple news can work well. I found concentrating on Nice Things that you’re bought, made, are doing with them was good and that enthusiasm is calming even if not directly shared. I will talk about travelling and sharing old entertainments in another blog.

Step back from your busy life and go into the micro. When they are feeling overwhelmed, it is all too easy to become so yourself and then the instinct to run away can seem like your only option. It’s then that you need to smile. Absurd though that sounds, it can be answer for both of you. When Dad was in meltdown asking where he was and what was going on (his shorthand for HELP!) and that he couldn’t think how he’d got to where he was, I would try and ground him. Steady his breathing. Include him.

 “When you think about it, Dad, none of us do. Not really. We all just have to take a deep breath and make the best of it. But look, It’s a beautiful day and the sun’s out. So let’s just enjoy it.”

And he did. He made a point of enjoying his life, even in its imperfect final chapter, as much as he could. I do hope it works for you and your loved one.

Next time: The Activity Trail

Getting a diagnosis for dementia may be something you are struggling with. It does after all remain something that most of us are unprepared to meet. Previous generations did not live so long and, when they did and developed the condition, it went by different names – mainly hurtful or dismissive – ranging from ‘senile’ to ‘ga-ga’ and everything in between. You may be coming to terms with the idea of your loved one having the condition and be in denial “It’s not possible, not them”, “It’s old age, surely. Everyone’s likely to be a bit vague at that age.” And once the shocking seed has been sown, there is likely to be a lot of information to take in from different sources and bodies. The medical establishment, the adult social service department of your local council, charities, the financial side of things (e.g. DWP) the online information sources – the communities and their dreaded forums. The online sources can be hugely useful and supportive but some are undeniably depressing and frightening places which can be detrimental to families or individuals at a time when they really need to be as strong and remain as clear-headed as possible. Reinventing yourself as a carer takes real strength. It is a wonderful gift to bestow on someone you love. Payback for a lifetime of love. It is also, of course, a life trauma.

Currently it is frequently a hard slog to get everything in place most of which will stem from that official diagnosis, and has the potential to go down many blind alleys along the way. Simply accessing the family GP let alone the specialists (such as geriatrician or old age psychologist) is much more daunting than it was even a short time ago. I think people should be forgiven for letting the whole thing lurk at the back of their mind. “It may not be that,” they tell themselves, “it’s only now and again, and he/she seems to be coping … most of the time.”

I would like to share my own story of the dementia which my father developed and how I made every mistake in the book. With the benefit of hindsight, I would, of course, have done things differently. I could have made changes in his lifestyle which might have helped to alleviate his symptoms, perhaps even delayed them. And I would have done my research about whether I was communicating/caring properly. Forewarned is forearmed. There is so much to learn both for the patient and for their family for, in truth, the greater understanding people have about the warning signs, how the disease progresses, its different forms and what you can do to help, the more your loved one will benefit and the better you will feel.

One of the problems which can snag getting a dementia diagnosis is that MCI (mild cognitive impairment) may be caused by an underlying and/or chronic medical condition (e.g. under-performing thyroid, diabetes, mild stroke, heart disease – particularly affecting blood flow/oxygen levels to the brain) or infection. The complication here is that dementia can come on at a time of life when it is not unexpected to have any of these ‘other’ reasons. Or, in my father’s case, nearly all of them.

Looking back on it, I think perhaps the signs were there to be read much earlier than they were. Like many people, I lived four hours’ drive away from my elderly parents who had pottered along in the same way – apparently – for years. We didn’t get to see them nearly as much as we should or would have liked to. My sister and I now remember certain phone calls to our parents where my father would answer but then almost immediately pass the phone over to our mother or else even “Ah, do you know I’ve gone completely foggy, forgotten what I wanted to say but your mother’s here and would like a word.” We’ve all of us had moments when we walk into a room and forget what we came there for and so didn’t think anything of it. But it happened a number of times and to each of us when we analyse it now. We didn’t see him in the flesh very often during that time and I believe our very capable and pin-sharp mother probably covered for him. She was used to organising the household and so it may have gone ‘under the radar’ for some time. It’s speculation of course, but I wish that I had at least seen him more than fleetingly and been able to ascertain as whether he was entirely himself at this time.

Following a bout of pneumonia, he had a nasty fall and injured his head, waiting a long time for an ambulance in the process. This may in fact have triggered the onset of the disease. As far as I know he showed no clear sign of it beforehand. While recovering from this, he developed a severe infection which again hospitalised him for many weeks, during which time his wife of sixty years, died. Something which was always going to shake his world.

Just before my mother died, she suggested something which I had long carried in my mind. Given that my elderly father would not be able to cope alone in his home, he would do much better if he moved in with my family. It would be a great solution and we all adored him. So, after a period in a rehab unit, he duly moved in, amid much excitement on the part of the family and of my father. But it soon became clear that Dad was not himself. He would become muddled, particularly in the evening.

It’s easy for family members to be distracted, as we were by medical problems. Dad’s broken hip and lack of mobility clouded things. My concern was to keep him safe and ensure that he acknowledged his new physical restrictions and wasn’t too ambitious. I needn’t have worried. Dad was excessively afraid of falling (a classic sign of the Lewy Body form of dementia I remain convinced that he suffered from). Having broken his back a few years earlier, it was normal for him to appear hunched, his head curled over in (further indicators of dementia) and because he walked with a zimmer, we were not able to notice any lack of arm swing (a classic sign) which we might, just might, have registered. Even when he had occasional hallucinations so typical of Lewy Body in particular, I put them down to the opiate painkillers he was on at the time. 

Another barrier to appreciating the onset of dementia is knowing a person well. It sounds contradictory but it’s an easy trap to fall into. I remember being woken up by my father standing in the hall reciting (word perfectly) The Dong with the Luminous Nose. This isn’t quite as absurd as it sounds. When I was young, he often indulged in late night poetry recitations and the fact that he now shared the house with his albeit teenage grandchildren could conceivably had stirred up those annoying/hilarious/glorious memories. My father was a lovable eccentric. We were used to the moments of madness he had shown all his life.  We also fell into another classic trap. We put these odd moments down to ‘old age’. Being forgetful, getting things muddled, particularly time and place and particularly at night when he tended to become upset about his wife no longer sharing his life. Depression of the sort that can follow bereavement (plus, in his case, a total change in personal circumstances) can be yet another ‘mask’ which dementia can hide behind.

Eventually, when arranging respite for him for the family holiday, it took an outside assessor to suggest that dementia might be something we might like to consider as part of his ongoing needs. The fact that she added, “it’s very early stage of course” did not lessen the shock. It triggered a GP visit who first of all took his ‘history’ of medical conditions, drugs etc. and then returned at a later date and gave him a CPCOG test. The result of this was extremely unsatisfactory from our point of view. Dad played a blinder scoring very highly was just one or two ‘misses’. The test results showed that he had capacity, memory and reasoning ability. But then he would. My father was a highly intelligent, highly educated man which can be yet another barrier to acknowledging the beginning of dementia. It was to be nearly two full years before he received the final conclusive diagnosis. Because I was afraid  of the ‘d’ word, I  had never mentioned it to the doctor even though it was in the back of my mind. Perhaps that was why it was not used by the doctor. There was no follow-up. The GP mentioned that it might be desirable to attend a memory clinic but, strange as it may seem, we didn’t push for it. The waiting list (up to two years) almost made it pointless, I thought. There are likely to be indications way before then as was the case with us. There was no pressing necessity for it. My sister and I had power of attorney and my father did not have to cope with daily living on his own. Besides, we had got used to Dad’s ways by then.

Generally, he was able to function perfectly well. Fiercely independent and determined ‘not to be a nuisance’ he washed and dressed himself well. The fact that he would put on a thin summer shirt in midwinter I’m ashamed to say, I put down to the effectiveness of my heating in the morning (I did notice him cold and bundled him up later, I hasten to add). Finally, familiarity did tell its own tale as Dad, a great speaker and amusing and original raconteur, began to go round in ‘loops’ with his topics of conversation. It took us a full eighteen months of living with us to realise and fully accept this and although horrified when I remember it now, I think this is partly a tribute to how well he coped and adapted to his condition, remarking with one of his dazzling, room-lighting smiles that he was “probably not entirely compos mentis.”

I am lucky that I never entirely lost the marvellous character that was my father. Others are less fortunate. The road to diagnosis is not necessarily straight but can be packed with obstacles along the way which can make a difficult situation even more impossible. My advice? Don’t be blindsided by other conditions, and don’t live in a fool’s paradise by coming up with alternative explanations. The sooner you get that diagnosis the more time you will have to come to terms with the condition, arm yourself with as much information and support as is available, and be ready to help your loved one live their best possible life with the disease. Caught really early, there are drugs which can help ameliorate and delay the condition. As it was, we never did get that diagnosis during the time he lived with us. It didn’t come until eighteen months after he moved into residential care.

If I had known, I would have done things differently. Changed his diet and introduced a firm exercise routine, joined groups and got tips myself. I’m not sure this would have benefitted my father particularly. He was happy to be with us in the heart of the family – something I am proud of – but I think it would have assisted us understand his condition much better, how to help and what to expect and, above all, made us feel we were properly doing our bit for him.

Next time: communicating through the dementia wall