Learning to live with, and without, dementia: Two personal perspectives
Introduction
Receiving the news of any life threatening or potentially life limiting condition is likely to impact hugely on individuals, family and friends. A diagnosis of cancer, heart disease, or other serious ill health such as dementia, can be devastating and life changing. This paper catalogues the journeys of two people diagnosed with dementia.
Many serious health problems seem to develop unexpectedly, upsetting your life and family routine without warning. Some conditions may have been anticipated, as certain symptoms may have been visible to the person and others over recent months. A diagnosis of a life limiting condition may feel overwhelming, and expose individuals to a range of difficult emotions: from initial fear and worry of an unknown future, to profound sadness, despair, and grief, as you consider the finality of eventually leaving your loved ones behind. The person and their family may feel disbelief and denial, unable to accept the diagnosis and wondering why they didn’t spot the symptoms and be better prepared for the difficult news. Some individuals might feel numb, immobilized by shock or the enormity of the future changes, and the fear that they will never be able to cope. Such emotional upheavals can make it difficult to function or think straight, and may even lead to transient changes in character or mood disorders such as anxiety and depression. Emotional responses to being diagnosed with a life limiting condition may be likened to a roller coaster ride; upbeat one day and feeling in control; down and overwhelmed with despair the next, as the realisation of an uncertain future becomes too much to bear.
The potential losses associated with deteriorating conditions that affect work, family, sense of self and financial implications are wide ranging and complex. Support during this time is crucial, and individuals should never be afraid to reach out and ask for support and help as they need it. There is no right or wrong way of dealing with a life changing diagnosis, each individual will deal with it in their own way, and in their own context, which needs to be acknowledged and respected. This paper explores the impact and uncertainty of two people diagnosed with dementia, only to be informed several years later that they did not have dementia at all. A truly roller coaster ride of emotions indeed.
Rationale and Aims
Although many people can live well with dementia and continue to lead fulfilling lives, people living with dementia are among some of the most vulnerable members of our society. Dementia can result in a diminishing ability to cope independently, with progressive changes in cognitive ability, fluctuating mental capacity and increasing difficulties in communication. Subsequently, people with dementia can be vulnerable to discrimination and abuse. Dementia remains a growing, global concern, as the cost to health and social care services is increasingly challenging. Increasing demand on services, austerity measures and reduced resources mean that sometimes the person with dementia has little involvement in decisions about their treatment and care, their rights disregarded, their voice not listened to or overpowered by others. Aspects relating to dementia care which provide insight into the lived experiences of those with a dementia diagnosis can inform professional carers’ in a very powerful way.
The aim of this paper is to critically explore the lived experiences of two people with a dementia diagnosis who attend a dementia support group at the Beth Johnson Foundation (BJF), in Stoke in Trent. Receiving a diagnosis of dementia was fraught with challenges, as the two people (and their respective families) tried to accommodate the associated losses and changes associated with their diagnosis. However, the two people are eventually told that they never had dementia. The emotional responses to this news are huge, as they try to understand what this means to them, their family and indeed their future.
Following consent, the two people were interviewed, the transcripts thematically analysed, the outcomes of which directly informed this discussion. Initially, two case studies are presented to set the context of this paper.
A case study approach
Single study research has a long and extensive tradition (Swanborn, 2010), particularly in the social and health sciences. A case study is described as the study of a social phenomenon (Swanborn, 2010) and are often described as single case study designs (Yin, 1994) or within case displays (Miles and Huberman, 1984). Case studies can offer depth as opposed to breadth (Gerring, 2017), highlighting the rich uniqueness of the examples, and are useful because readers can relate to them rather than generalise from them. Case studies are typically descriptive (Gerring, 2017), and the two descriptive case studies presented here (Sue; Dave) are provided to illustrate the diverse complexities of the people that are the focus of this critical exploration
Case Study one: Sue
Sue is 65 years old and lives with her husband John in an urban area
in Stoke on Trent. She was diagnosed with Alzheimer’s type of Dementia approximately six years ago. She originally went to see her GP as her anxiety and depression had exacerbated alongside often forgetting her words. Sue’s GP referred her to the memory clinic where she had the usual tests to determine Dementia. Tests include blood tests, MMSE (Mini Mental State Exam), an MRI (Scan of the Brain) and history of other medical issues. The outcome was a diagnosis of Alzheimer’s disease.
Sue and her husband John were distraught. Sue didn’t want anyone to know including her close family, indeed Sue spoke to John about going to Dignitas as she felt she could not live with Alzheimer’s. Conversely, John approached various organisations and professionals wanting to know as much about the illness as he could. Over time Sue accepted she was living with dementia and she joined the Beth Johnson Foundation peer support group to enable her to talk to others living with dementia. Sue continued to struggle with words she also had a couple of episodes where in her words “she felt spaced out”.
After one of these episodes, Sue went to see her GP who referred her back to the memory clinic, where all the tests were conducted again. Sue had felt for some time that her pathway of living with dementia was not what she expected after six years. Sue then met with a consultant, when she was duly informed she did not have any type of dementia either presently or indeed ever. The Consultant rescinded her previous diagnosis of dementia, and she was told she had been wrongly given a diagnosis of Alzheimer’s.
Case Study two: Dave
Dave is 64-years-old and lives with his wife Denise in a bungalow they had built specially to live in when he retired. Dave had previously owned his own business via hard work throughout his working life. Approximately five years ago Dave had gone to see his GP as he was having issues around spacial awareness. Dave was also using inappropriate words to family and friends. He was frequently falling due to not being aware of steps or how far away something was from him. Dave had finally gone to his GP after a near miss when driving in his car due to his lack of spacial awareness.
His GP suggested he go to the memory clinic, where they carried out tests relating to dementia. These included blood tests, MMSE (Mini Mental State Exam), an MRI scan (looking at the brain) along with a history of any medical issues. Dave and his wife met with the Consultant, where he was informed that he had Alzheimer’s type of dementia. Dave and his wife were devastated.
Dave immediately surrendered his driving licence. After being told he had Alzheimer’s, David’s two children moved house to be physically closer to support him. During the first year of being told, Dave stayed in his house not wanting to socialise with family or friends.
Dave was persuaded by his wife to join the Beth Johnson Foundation peer support group. Initially he said he would come the one time but it felt good to be with others living with dementia and he continued to attend the meetings.
After four years, Dave requested another scan which was conducted along with other tests related to dementia. He saw a different Consultant, where he was informed that he did not have Alzheimer’s and had never had any type of dementia. Dave insisted on seeing an independent Consultant who was able to confirm he had never had any type of dementia.
Such details provide the backcloth against which the interview was conducted and the context of the journeys undertaken.
Discussion
Receiving life changing news directly impacts on the person’s expectations of their future. Any hopes or dreams held may be ‘shattered’ as the person has to accommodate the prospect of a different life than anticipated or indeed expected (Bowman, 2001). When analysing the transcript of the two interviewees, four key themes and a number of sub themes, emerged:
- The impact of a diagnosis
- Responding to a misdiagnosis:
- Self
- Wider impact
- Family
- Support:
- Professional
- Peer support
- Future messages
The impact of the diagnosis was fraught with difficulties, as the two interviewees felt vulnerable, ashamed, and could not find the words to tell friends and family. They could not reassure family of the future, because they didn’t know what the future might hold. They were locked in a world of uncertainty, where change was frequent and autonomy regularly threatened. They couldn’t plan for the immediate or longer term, since the progression of the condition was variable and unpredictable. The sense of loss was profound; they felt shock, fear anger, confusion, abandonment and inherent isolation (Worden, 2009). As they learned to adapt to this unpredictable world, support became important, whether it was attending the BJF support group, or reaching out for medical support and explanations.
The interviewees felt that professionals often focussed on the beginning, the diagnosis, and ultimately the ending, whereas those with the diagnosis had to remain focused on the life that was between these two polar extremes. The sense of loneliness was profound.
‘…..at the end of the day, you are on your own…….’
Consistency of professional support was important, but often absent. Much information and education was found by accident and then personal diligence.
To be told you never had dementia came completely out of the blue to both interviewees, and was perceived as being potentially worse than the initial diagnosis.
‘……to be honest, they didn’t explain anything at all…’
‘…..being told that I haven’t got it, was worse than being told that I had’…..
They both felt that they lacked any adequate explanation of the misdiagnosis, and the sense of loss was multiple and successive. One family had moved house to be closer to their parents, only to discover that they never had dementia. The interviewees felt fraudulent, and suspected that people didn’t believe the misdiagnosis, but believed them to be in denial of their condition. The overwhelming loss was the sense that they both had underlying, missed diagnoses, which had not been diagnosed or indeed treated for several years. One person was subsequently diagnosed with Parkinson’s disease; the other with a brain lesion. Neither will truly know the impact of this misdiagnosis on their current health conditions.
‘…..the thing is, this should have been diagnosed 4-5 years ago, not now; it makes you wonder whether things have got worse now because of the misdiagnosis….’
Although a truly challenging and traumatic experience, both interviewees positively reflected on their dementia journey, saying how they had both ‘…learned to live well with it {dementia}…’ and that they had achieved things they would never have done if they had never been diagnosed at all.
Both had huge concerns for others in their position, worried that other people may be similarly misdiagnosed. They asserted the need for improved contact with medical professionals, increased information and readily available information; and the importance of getting a second opinion if there is any doubt whatsoever about the diagnosis. Such messages remain important to anyone with a diagnosis of such a life changing condition.
Conclusion
Any diagnosis of a life limiting condition is fraught with challenges, and the impacts are wide ranging and complex. Oscillating between living well with it (and feeling overwhelmed by it) throughout the dementia journey is to be expected (Stroebe and Shutt, 1999), but accurate diagnosis, regular updates and medical checks, and appropriate, person centred support remain crucial.
People with a diagnosis of dementia have a mixture of experiences, both good and not so good, to share. Accurate and accessible information, good communication and opportunities to talk with families, professionals and peer support groups can help to ensure person centred, lived experiences, regardless of the diagnosis and the personal journeys travelled. Clearly, the impacts of a change in diagnosis presents with short and longer-term implications as people have to deal with the physical, psychological, emotional, financial and legal connotations involved.
‘Once you are over the initial shock, and we were very lucky to get into the Beth Johnson Foundation support group, life has been very good. We have done things we would never have normally done.’
Betty Machin, Dementia Advocacy, Project Lead
Laura Higgins, Dementia Advocacy Co-ordinator
Sue Read, CEO
Commentary – Learning to Live with Disruptive Changes
From the moment of birth until this very moment, we have been placing pictures of our lives inside ourselves. Over time some pictures take on a template quality which morph into an assumed world. We expect the next day to resemble the previous days. When disruptive changes occur, re-storying lives is required.
These two case studies began as Sue and Dave crossed thresholds from their assumed worlds into a new world of medical labelling, shattering their and their families’ dreams and future plans. They began to re-author their lives. Leaving aside, for the moment, the mistaken assessments and diagnoses, their accounts are a clarion call for clinicians to pause after giving news that can alter assumed worlds. Pause, ask something like: What did you hear me say? Let’s talk about what I just told you. Both Dave and Sue made assumptions, as did their families, without clear information about the range of possibilities for someone living with an Alzheimer’s type of dementia. They, therefore, moved into a space of ambiguity, ambiguity that was exacerbated by too little information, only later found to be misinformation.
Early in my career, I was taught by wise grievers that when an assumed world is shattered, one must grieve that shattered dream as a necessary step toward re-authoring lives and the creation of an adapted story. Coping, I learned, involves discernment of what of the past can be taken into the next world AND what must be discarded or adapted for embracing and coping with what is next. One may have to go so far as to re-introduce oneself to oneself and those in their circle of care. Grieving the shattered dream is essential for all to embrace the new realities of individual and collective lives. This process will be easier for some; a major challenge for others. Disruptions to one’s health are family conditions; all are affected.
Sue and Dave, after experiencing their shattered dreams, strived to cope and live based on their interpretations of their diagnoses. Not only was there the much-feared condition of Alzheimer’s but also the falling, forgetfulness, anxiety and more that each had experienced. To discover months or years later that the initial assessment of their health was wrong required another adjustment. While the news may have been perceived as a relief from the earlier assessment – some would presume the opposite of a shattered dream – both Dave and Sue had experienced and / or shown behaviours that deserve further exploration. Re-authoring their new stories may require a similar introduction to family and friends AND a discernment of what is now their condition. This is a not a rare recommendation. What might be called normal aging requires a similar process of periodic assessments of one’s health, abilities both physical and cognitive, financial resources, and the resulting implications for choices as one ages.
To summarize, when disruptive changes occur, especially those that shake assumed worlds, individuals and families should pause, get second opinions, seek information, then grieve shattered dreams as a step toward creating adaptive, more realistic dreams for the emerging future story.
Ted Bowman, Trainer, Writer, and Educator, Minnesota, USA
References
Bowman, T. (2001). Finding hope when dreams have shattered. USA: Ted Bowman.
Gerring, J. 2017). Case study research: Principles and practices (2nd edit). Cambridge, Cambridgeshire University Press.
Stroebe, M. & Schut, H. (1999). The dual process model of grief. Death Studies, 23(3):197-224.
Swanborn, P (2010). Case study research: What, why and how? London, Sage Publ.
Yin, R. (1994). Case study research: design and methods (2nd edit). London, Sage Publ.