Older lady looking worried with daughter
Diagnosing dementia and supporting patients in primary care, how do we navigate the minefield?
Primary care settings are most likely the first port of call for people and their loved ones’ when concerned about changes in cognition, moods and behaviours. Whilst there is a push for assessing mild cognitive impairment and dementia in primary care to promote early intervention, the complexity of such conditions that come under the umbrella term of dementia is often not recognised. Where once any primary care doctor’s concerns would result in a referral to a memory clinic specialist such as a neurologist, psychiatrist or gerontologist, there is an expectation now for preliminary investigations to be conducted in primary care.
Differential diagnosis of dementia
An important factor to bear in mind is that dementia is not one condition, and the idiosyncrasies of the differential diagnoses, especially in the early stages is marked. For instance, the differences between Lewy Body dementia (LBD) and Alzheimer’s disease at the early stage can vary greatly. I know of patients whose first symptoms of LBD presented as changes in their sense of smell and taste (something nowadays that we are more aware of and need to differentiate from Covid), and who experience movement and sleep disorders, whilst their memory can be relatively unaffected for a number of years. One profound characteristic of LBD is their fluctuating consciousness and attention and sleep disturbances, where dreams, are often reenacted, sometimes in very physical ways. And of course, frontotemporal dementias can occur in younger patients where they present with language difficulties and aphasia and/or behavioural changes, depending on where the damage starts.
When we explore the symptoms in more detail, by being curious and digging a little deeper into how the dementia is affecting them we can help them manage their symptoms, e.g. if a person has Posterior Cortical Atrophy, they are likely to experience bizarre visual changes such as seeing a plate in front of them but not the food on the plate and they may be aware there is food there but not see it – they need to know how to manage these symptoms. It must be very frightening to experience and once people are in fear, that is often when they start to become agitated.
So firstly, I put this question out there – Is it time that we stop calling our services- memory clinics? as, in my experience (since working in the early 90s, and seeing so much of our knowledge of these conditions develop over the decades) this automatically filters out those patients who have changes in sensory symptoms and sometimes movement disorders, and perpetuates the myth that dementia is solely a memory problem. When patients present with atypical symptoms (that may not be that atypical when we know what to look for!) particularly early on in the disease trajectory, time to diagnosis can take years and the complexity of these conditions has led to patients and their loved ones becoming frustrated, often resulting in mental health problems such as depression, anxiety and even suicidal ideation. Whilst there are a number of research projects examining innovative ways of diagnosing, there is no current definitive diagnostic test, and as the pathology differs with each type of dementia, maybe it’s time we got rid of the term altogether!!! Please share your thoughts on that.
Putting the debate of the name of the condition(s) aside for one moment, the pressing concern is, what can we do in the meantime for our patients who present to primary care with such symptoms? It is important that we manage their expectations and that they and their loved ones are told that making a diagnosis isn’t always easy or a straightforward process. Firstly, we need to rule out other possible conditions such as hypothyroidism, Vit b12 deficiency, diabetes, delirium and depression. When managing a self-referral clinic in the mid 1990s I noted the majority of patients presented with low mood and many women with menopausal symptoms attended (until recently this has been largely ignored) https://www.health.harvard.edu/blog/menopause-and-memory-know-the-facts-202111032630 We have learnt much over the years of the effects of stress and hormonal imbalances. Whilst many who presented had reversible symptoms, some of those patients did go on to be diagnosed with some form of dementia in our main memory clinic over time.
What cognitive symptoms are caused by dementia?
The dementias affect cognitive function including our thinking processes such as language, memory, attention, visuospatial skills, intellectual ability, and planning and decision making. So, it is logical to assess cognition and while we’re at it, mental capacity (MC) (now that’s not straightforward at all, despite the Mental Capacity Act, (I note it is often performed as a tick boxing exercise). For many of us who have worked in dementia care for many years will tell you, that there can be much waxing and waning of a person’s mental capacity, that depends on many factors, including time of day, surroundings, physical health and much more https://www.psychologytoday.com/us/blog/high-octane-brain/202407/cognitive-testing-the-facts-myths-and-value
The expertise required to undertake cognitive screening tests (and mental capacity) to assess a patients’ cognition needs to be noted. This, again is not a tick boxing exercise and administering these tests requires much expertise (neuropsychology). It is as much an art as a science, also, none of the words to describe them conjure up great experiences and often negative memories of school; test! assessment! How would any of us feel to be on the receiving end of being tested. The sensitivity required to assess someone which often shows up the person’s difficulties is paramount. A quick five-minute crude Mini Mental State Examination https://www.psychdb.com/_media/mmse.pdf may suffice with some patients but it does not pick up the more subtle symptoms of all dementias and is not a sensitive tool for the early stages, or for using with people who have sensory losses. Whilst the responses to the cognitive tests can contribute greatly to the diagnostic process, the art is also in the observation of how the patient approaches and answers the questions. Where people have a greater cognitive reserve i.e. those educated to a higher level; people who socially interact and effectively exercise their brain more over their lifespan, may be able to overcome or mask their difficulties more easily. https://theconversation.com/what-is-cognitive-reserve-how-we-can-protect-our-brains-from-memory-loss-and-dementia-76591
As I mentioned above, it is often how the questions are answered that can give clues to the person’s condition. I refer to the late great Oliver Sacks https://www.oliversacks.com/who helped me overcome my years of feeling guilty for being curious and fascinated by how dementia and other neurological conditions affect people. His enthusiasm and scientific mind, whilst exploring how each patient coped with their symptoms and navigated their world with dignity gave us a richness of understanding of their lived experience. I would recommend that all staff read his work – I am sure that reading “The man who mistook his wife for a hat” https://en.wikipedia.org/wiki/The_Man_Who_Mistook_His_Wife_for_a_Hat during my student nursing days (in the 1980s) started me on this road – exploring the human condition as the brain deteriorates. So having digressed, an example of such interest and curiosity is where I have seen language elaborately manipulated during cognitive assessments to compensate for a word that cannot be retrieved and when patients are known to confabulate when asked about certain memories https://psychcentral.com/health/confabulation-definition
Speed of processing
A person who has dementia cannot be rushed, as their speed of processing information and changes in attention are likely to be affected. For instance, by the time they have processed a question you have asked them and then taken the time to work out how they want to respond, in that time they may have forgotten what they were asked. Can we imagine how that must feel? words and questions slipping away. Attention is another huge factor affected by dementia, and one to be explored in a later blog. Also, stress has a profound impact on our cognition https://www.nature.com/articles/s41380-023-01986-4 . So, we have to be compassionate and take time with the person when they present to us. Our primary care settings need to be clutter free – that means auditory and visually clutter free – RADIOS OFF!. If there is too much noise and too much to see to process, the person’s attention is affected and will impact on how they can respond. This may also make them very stressed and perpetuate a sense of fear leading to agitation.
One other symptom, that doesn’t get much coverage is apathy. Mood changes such as agitation are often cited, but apathy is something that can occur early on, but of course could also be a symptom of depression, chronic fatigue and other conditions. I have waffled on here, but I think it is important to discuss the complexity of the dementia conditions including Alzheimer’s disease and to note the recent changes in diagnostic criteria, in order to identify the difficult roles that primary care doctors and nurses have in supporting patients through the diagnostic process. https://www.dementiaresearcher.nihr.ac.uk/revised-diagnostic-criteria-for-alzheimers-published/print/
What are the benefits of an early dementia diagnosis?
So why is it so important that we get this right?
Let’s move away from the old medical nihilistic view that nothing can be done; there is much that we can do to help a person who has mild cognitive impairment or dementia. For a start, we know that certain lifestyle choices lead to an increased risk of dementia and that making changes (such as increasing activity, healthy diet, reducing alcohol, managing blood pressure, increasing social interaction, addressing hearing difficulties which can reduce cognitive reserve due to withdrawing from social interaction and becoming more isolated), and stopping smoking may help slow down deterioration.
This whistle stop tour is briefly taking us to consider the effects of polypharmacy in older adults, where awareness of contraindications of and the anticholinesterase effect of many drugs on older adults may exacerbate a person’s symptoms. Also, the dangers of psychoactive medications, particularly in people who have LBD need to be observed. https://www.lbda.org/treatment/ When we understand the nature of the condition(s) and how they affect a person, we can learn how to problem solve and approach them. When people who have dementia struggle to communicate verbally, the language of emotions steps in https://www.findingthelightindementia.com/home-2/
How they perceive their world around them and how we approach them can be very frightening, they need to feel safe. This advice should be relayed to loved ones and families, who too need training. Staff who have undertaken my Finding the Light in Dementia training have “strongly agreed” that learning how the person may experience their world whilst applying the communication skills taught has improved the quality and safety of care they give; patients are less agitated. When we can share this knowledge with loved ones, and domiciliary and care home staff, there is a potential for unnecessary hospitalisations to be avoided and admission to residential care delayed. There are many non-pharmacological interventions that can help (and are the subject for another blog). But here are some recommendations below:
Advance planning
Receiving an early accurate diagnosis gives the person and their loved ones the opportunity to make decisions on how to live as well as possible, with the diagnosis and to plan for the future. Over time, the person will struggle to make judgments, weigh up risks and benefits and make decisions, so it is vital that they are able to make decisions about their condition, treatment and care whilst they still have mental capacity. They need to be signposted to information about their legal rights and advised to apply for lasting power of attorney and financial planning. https://www.gov.uk/power-of-attorney This is especially pertinent with people living with rarer and young onset form of dementia where they may still be in work and have dependents. https://www.raredementiasupport.org/ .Once a person loses their mental capacity, it becomes much more complex to support them https://www.mind.org.uk/information-support/legal-rights/mental-capacity-act-2005/capacity/
We know that there are lifestyle changes that can improve a person’s symptoms. It is vital at first that people are given time to come to terms with their diagnosis. Many of the contributors to our training programmes and courses. https://www.findingthelightindementia.com/care-staff-course/ are living with dementia and their stories of receiving a diagnosis are not positive ones. They tell us that they need to be told with compassion and hope, and shown that they can live well with dementia. Many have been sent away and told to get their affairs in order and there is nothing that can be done! This nihilistic view is deeply damaging and perpetuates the age-old stigma of dementia.There is much that can be done. Peer support has been life affirming for many who have been on the verge of suicide following their diagnosis, where some people have even found a greater purpose in their lives since diagnosis. Of course this isn’t always the case, but we must be able to give people hope and signpost them to those that can offer that. https://www.dementiavoices.org.uk/
Positive actions that can be taken in the meantime to help their cognitive, sensory, physical and mental health can be recommended and with social prescribing a person can be directed to meaningful and purposeful pursuits which may in some people slow down the deterioration https://www.kingsfund.org.uk/insight-and-analysis/long-reads/social-prescribing https://artsfordementia.org/
Three Questions for you
To conclude, I hope this has been informative and given you a bit more of an idea of what the person may be experiencing. Also, that we needn’t feel helpless when we see patients who have cognitive impairment or dementia; there is much that can be done and I will be exploring this more in future blogs. I leave you with 3 questions and look forward to your responses:
1)Should we change the name of memory clinics to something that reflects the other difficulties that people experience (e.g. sensory, movement?)
2)Should we stop using the term dementia and differentiate between the different conditions?
3)What will you do to make your patients’ consultations better?
Thanks for reading, please share with your colleagues and networks,
Jane