Engaging the person with young-onset dementia: working in partnership to support meaningful activity

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Imelda Gilmore Dementia Australia, Australia

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Imelda cared for her husband through his journey with young-onset Alzheimer’s disease. He was diagnosed at the age of 64 and died aged 68. This article describes many of the challenges that she faced in ensuring that her husband continued to experience purpose and meaning even as the ravages of the disease robbed him of his skills. She focuses on the need for the caregiver and the care professional to respond to the unique way in which the person being cared for engages with his or her world and to co-develop activities that are meaningful to them.

Abstract

Imelda cared for her husband through his journey with young-onset Alzheimer’s disease. He was diagnosed at the age of 64 and died aged 68. This article describes many of the challenges that she faced in ensuring that her husband continued to experience purpose and meaning even as the ravages of the disease robbed him of his skills. She focuses on the need for the caregiver and the care professional to respond to the unique way in which the person being cared for engages with his or her world and to co-develop activities that are meaningful to them.

I cared for Graham through his journey with young-onset Alzheimer’s disease. He was diagnosed at the age of 64 and died aged 68. In this article, I focus on the challenges that I faced in respecting my husband’s desire for purpose and meaning even as the ravages of the disease robbed him of his skills. I explain why I believe that each person living with dementia has a set of unique ways of engaging with his or her world and that it is the role of the caregiver and care professional to respond to what matters to that person and co-develop activities that are meaningful to them.

My husband, Graham, was a top administrator in the public service, the latter half of his career being spent as a branch manager with responsibility for a sizeable staff group and for many millions of dollars in estate administration. He was meticulous in his work and in his attention to detail. He was a caring manager who commanded respect; he was always approachable and compassionate with staff.

Late in 2005, two years before his planned retirement at age 60, he started mentioning the odd slip-up at work, forgetting to do something or even occasionally making a financial error that needed to be rectified. At home, he could sometimes be forgetful. He was in an extremely stressful work situation and I assumed that this would all settle when he retired.

Graham retired in 2007. In the first years following his retirement, it was very clear that the little slips were not going to go away; in fact, they were gaining momentum. By this time, I knew that there was something wrong but to get Graham to see a specialist doctor (a neurologist) took until the middle of 2010, when he was 62 years old. At that time, there was little talk about young-onset dementia and it was not until we changed neurologists that a definitive diagnosis was provided; this was in February 2012.

Graham, now aged 64, was beginning to experience more serious symptoms and the journey was becoming bumpy and often stressful for me as his carer. As is common among people with young-onset Alzheimer’s disease, there is a point of sudden decline; this is a stage specific to this condition. Almost overnight, Graham became psychotic, neurotic, aggressive and depressed. We would have conversations where he would become highly agitated about what I had done with all our money and these could go on for a couple of hours with absolutely no resolution or rational pattern. Other conversations about his growing limitations led to statements like “I might as well go and jump off the balcony”. I soon learned that I needed to come up with a diversion. Once I became skilled at that, these kinds of challenging interactions became easier to deal with and the related tensions were also easier to diffuse.

Finding things for him to do safely was becoming increasingly difficult. I was learning ‘on the job’ as each day brought new challenges. Graham had a number of hobbies that he particularly enjoyed. When we were not at church, visiting friends or family, or shopping, the main ones were:

  • Swimming, which we did together; a lovely exercise from which we both derived a lot of physical and social pleasure. He would chat with some of the other regulars in the changing room and it was generally a stimulating time for him.

  • Golf – the group he played with during his working years continued to play together as each retired in turn.

  • Watching television or music DVDs – a shared interest.

  • Reading – on average, he would read a book over a three-week period.

  • He loved gardening, keeping everything looking great; he also loved to bring me a rose that he had cut from the garden.

In July 2012, I retired from my job as an assistant database administrator in a busy information technology (IT) environment to care for Graham 24/7. I soon realised that I needed a regular break from caring as it was very demanding, so I sought out a day-care facility. The visits were once a week. He was at the stage where some of his social interactions were sometimes challenging, but he was still in that in-between zone where he was acutely aware of what he was losing. Although the qualified staff at the day-care centre tried to include him in activities such as throwing balls in a bucket and drawing with crayons, these did not engage him at all; he was annoyed and agitated when I collected him. The crunch came when I had left him at the centre on the fourth visit and I headed off to the hairdresser. I was almost there (after a 30-minute drive), looking forward to some pampering, when I got the call to say that I needed to come and pick Graham up because they could not engage him and he was unsettling the other attendees. I felt betrayed by professionals who I believed knew how to care for my husband and I cried all the way back to the day-care centre. For those younger people with dementia who have been in highly skilled careers, the loss of key skills is especially devastating; we owe it to them to try to acknowledge this by engaging them in activities that support their dignity and intelligence.

So, there was I, back on my own as a carer. Once the ravages of the Alzheimer’s disease began to take hold, I was faced with a key dilemma: how do I occupy someone whose enjoyment and sense of usefulness depended on activities that were now beyond his ability? The period from December 2012, when Graham suddenly hit a stage of rapid decline, to August 2013, when he went into permanent care, were the most challenging, exhausting and, at times, frightening for me as a carer. Paradoxically, this was also a time of enrichment as I learned new skills as a carer and successfully – albeit occasionally – engaged my husband in a number of activities that made him feel useful and valued.

Graham used to like to do the little bit of washing up that did not go in the dishwasher. The task itself was now beyond him but I discovered that I could give him the cutlery basket out of the dishwasher and ask him to put the clean cutlery away. Armed with a tea towel, he would start to wipe the cutlery in the basket and line up the items along the bench; then he would take out all the other items stored in the cutlery drawer, one by one, ‘dry’ them as well and line them up on the bench too. I could leave him there for an hour and a half while I completed other chores in the vicinity and he would happily do his very helpful work, for which I thanked him profusely.

Knowing that Graham’s working day had been filled with writing notes on legal files, it was no surprise to me that every piece of paper, every book, every magazine that was within reach started to have notes appearing on it. Here, I saw an opportunity for another activity. I pulled out some old manila folders, pieces of scrap paper and pages from junk mail, and these became his ‘files’ on the dining-room table. Sure enough, the pen lying near them would often get picked up and he would write his ‘notes’.

I did experience failures. Graham had a jar for spare change that he would periodically bag up in their denominations. One day, when I was looking for an activity to engage him, I thought that counting the coins was something that he would enjoy and would also occupy some time. He sat at the table with the pile of coins and bags. Two hours later, there were just a few little haphazard piles of various coins. He wanted to keep going but said, distressed, “I’m sorry, I don’t know what I’m doing here”.

Sometimes, I ‘allowed’ Graham to undertake a task even though I knew that it would end in failure. One morning, he wanted to make an espresso coffee in the machine. This had been his domain, his machine. Literally three hours and many failures later, he gave up, concerned and distressed. However, what could I have done without stepping in and taking over? I still do not know!

Graham’s lovely golf mates still kept in touch, even long after he was no longer able to understand the game; they would take him around the course, giving him great scores and then socialising afterwards. This did wonders for his self-esteem until this activity was also beyond him.

From July 2012, he needed supervision 24/7. I could no longer take him into the shops because of his agitation; I needed both a respite break and a way of going shopping. Graham had reached the magical age of 65 when the aged-care facilities, assessments and support were suddenly accessible, but ‘aged care’ failed dismally in providing appropriate support and respect for the life skills of Graham and other younger people with dementia. While it is the case that the dementia care system is now starting to recognise that it needs to provide more age-appropriate services and activities for younger people, this process is in the early stages. Very often, younger people with dementia slip through the cracks or simply have to fit in with an environment that is not set up to meet their unique needs.

Following an Aged Care Assessment Team assessment in March 2012, Graham’s decline continued relentlessly. I was becoming totally overwhelmed by the need to come up with activities to occupy my once highly capable husband who now had the ability of a toddler. Having no relief from my caring duties, I soon became what is described as a ‘carer in crisis’.

Following advice from Dementia Australia, I referred Graham to a community-based organisation, who allocated him a caseworker. The caseworker arranged for an occupational therapist to examine our home in order to look for ‘areas of risk’. The only outcome of this visit – after a two-month wait – was safety features in the shower.

I requested that the organisation arrange for a care worker to visit Graham once a week (this was a charged-for service). This gentleman would come and collect my reluctant husband, and then they would pick up another gentleman and go for an outing. Unfortunately, each week, this turned out to be the local club for a few beers and a game of snooker. In his day, Graham would go to a club occasionally, but clubs, smoke, beer and snooker were way, way down his list of preferred activities and the noise was now a source of agitation for him. This was very obviously not an activity that was beneficial for him. Again, I felt let down by what I saw as a professional service. It was not in any way personalised to Graham’s needs, or mine, as any relief that I gained by his being out of the house was short-lived and was also a source of increased agitation.

Next, we had a bright, chatty middle-aged lady coming to our home arranged via the same organisation. I needed a diversion to allow me to get away because Graham had developed acute separation anxiety. The care worker and Graham would take the dog for a walk and I would sneak away; his walking endurance was diminishing so the walks were brief, which left the care worker looking for things to distract him from pacing and waiting for me at the door. By now, even some gardening was beyond his ability, nor did it any longer engage him.

The care worker spotted Graham’s growing obsession with writing notes so she experimented and found that he liked her to sit with him and draw. So, I bought a sketch book and some drawing pencils and they had one or two sessions with my husband writing ‘notes’ and sketching little flowers or animals. However, a few weeks later, after a visit from a stand-in care worker who seemed terrified of his pacing and agitation and was herself waiting outside for me to come home, the whole thing crumbled and he refused to have anyone come to stay with him. Another failure!

Gradually, I was becoming a prisoner of Alzheimer’s disease. A particularly cruel blow was when the illness robbed us of our swimming. At age 65, Graham forgot how to swim. If I swam, he was not safe in the water; he would climb out of the pool, wander around and I would lose sight of him. So, this brief period of respite and shared enjoyment was no longer possible. I began to react to the lack of stress relief. Swimming had been my way of de-stressing through the caring journey. I was on call 24/7. When Graham forgot how to swim, it meant that even this brief respite was denied me. It was a real blow. I had reached the end of my emotional and physical tether.

Finally, through a different community-based organisation, we discovered a truly excellent activity intervention. We were allocated 90 minutes a week with a lovely gentleman care worker. He would meet us at the pool, get Graham ready to go in the water and then would take him into the shallow, heated pool for his ‘training’. Graham referred to him as his swimming coach; he would stand at the side of the pool as Graham walked or waded up and down, calling out “Well done! Come on, one more lap!”.

After his training session, they would go to the changing rooms, the care worker would shower and change Graham, and then they would get a coffee. I would find them after my laps, sitting there enjoying their coffee and a chat. The care worker would commend Graham on how well he was going with his training. This experience was priceless – I had my much-needed stress relief and he was experiencing a sense of pride in his achievements. It offered an emotional lifeline for me as his carer, and Graham enjoyed it too; so it was of double benefit.

In mid-August 2012, I organised a two-week residential respite break for Graham. He had been wandering at night, which meant that for a couple of months, I was no longer able to get anything like a good night’s sleep. I became exhausted. The respite care was 2.5 hours’ drive from our home but that was all that was available for someone with Graham’s high levels of need at the time. After two days of caring for him, the registered nurse in charge rang me and said that even she, as a professional, would not be able to care for Graham 24/7. She advised that it was time for him to be admitted permanently into a nursing home for his own safety and well-being. I had been told five months earlier that he should go into a home but I was not ready for this step, nor did I believe that I had done all that I could to care for my husband, whom I loved dearly.

My husband was admitted to a nursing home aged 65. He went through the expected period of settling in; however, diversional staff1 were rarely able to encourage him to take part in the usual ‘aged-care’ group activities. One puzzling thing for staff was that Graham would often take the visitors’ sign-in book, take one of the flat cushions from a chair, unzip the cover and put the sign-in book in the cushion, carrying it around with him under his arm. Sometimes, he would take the book and scribble notes on the pages. When the diversional therapist and I had a chat, she had a brilliant idea: she provided a large journal and some pens and I brought in a briefcase. Soon, she started arranging ‘meetings’ with Graham and he wrote lots of notes! A brilliant solution and a fine example of finding a meaningful activity that is totally suited to the person.

Graham would walk around the corridors of the nursing home all day; in his eyes, they represented his ‘office’ and the care staff were ‘his staff’. Sometimes, the medication nurse would get him to join her on her rounds and ‘help’, and she would thank him with a chocolate. Staff learned that if he picked up something off a desk, instead of reacting negatively, they would thank him profusely for ‘finding it’ for them. Again, these care professionals became attuned to what Graham enjoyed; they encouraged him to engage in activities that helped him feel useful.

With his continuing decline, books and pens and briefcases gradually ceased to figure in his world. Soon, his two remaining life skills were walking and sometimes feeding himself. I believe the walking continued to be his work activity, although his language ability declined. Engaging him in an activity related to his care was best handled by staff, who discovered that he still had a sense of humour; when they made him laugh, this disarmed his agitation or refusal to be cared for. The laughter released a more relaxed demeanour, enriching for Graham and a great relief for the care professional. When he became agitated or restless, staff would say to him, “Come on Graham, let’s do this” or “You can help me with that”. They would take him by the hand and lead him to the simple activity that he could ‘help’ with, and this would capture his attention, distracting him from whatever it was that had caused him to be agitated. Any distraction was beneficial for that reason: it would divert his attention away from his agitation and distress.

Towards the end, I sometimes needed to find a way to get Graham to sit on his bed, a direction he could no longer understand and a mechanical function that he no longer possessed. Sometimes, he just froze and no amount of gentle pushing worked. However, I would look up into his eyes and say “Would you like to dance, darling?”. As I put my arms up, he automatically assumed the position (memories of our ballroom-dancing days) and then we would slowly start to shuffle till I got him to the right spot. It would last less than 30 seconds but it usually worked, and I like to think I gave him just a brief flash of a cherished memory.

All too soon, our journey ended but, as I relied on God’s help, I know I did my best to communicate with my sweetheart through these simple interactions and hopefully made him feel loved, cherished and important even in the very late stages of the disease. I believe that when a care professional and a carer work in harmony to honour the younger person living with dementia by finding activities that mimic their life-course roles, and engage skills and memories from the past, they provide a key to enhancing quality of life and helping the person feel valued, useful and involved.

Postlude

Despite the trauma and the tragedy of this cruel disease, I consider myself truly blessed and privileged to have been allowed to walk through this journey with my husband. We were deeply in love and Graham always remained my sweetheart, even though he ceased to recognise me as his wife long before he entered residential care. In response to people’s comments, I would say, “He doesn’t know who I am, but I know who he is”. I was more deeply in love with him than ever when he died just a month short of our 46th wedding anniversary and so ended our earthly journey together – until we meet again.

Note

1

Staff whose role it is to create interesting activities for residents; they are now called lifestyle officers.

Imelda Gilmore Dementia Australia, Australia

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