September is World Alzheimer's Month, a campaign to raise awareness and challenge the stigma surrounding dementia. My doctoral research focuses on the experiences of family caregivers of people with dementia. I hope that by shining a light on the experiences of people with dementia and their caregivers, we will continue to develop our understanding of their needs, so that as a society, we can support these families better.
A Few Statistics…
Dementia is something that affects many of us in our lifetime, either directly or indirectly. There are approximately 850,000 people living with dementia in the UK (Alzheimer’s Research UK, 2017). Worldwide, this number is expected to roughly double every 20 years (Abbott, 2011).
'They went on computers and I found I couldn't keep up with it, I got all mithered, everything seemed confused to me and I couldn't understand why.'
Approximately two thirds of people with dementia are living in the community, many of whom are cared for by family members. There are approximately 700,000 family and friends in the UK currently caring for a person with dementia (Alzheimer’s Research UK, 2017). In order to provide effective care for those with dementia, we need to ensure that family carers’ needs are also being met.
‘It’s almost like a tandem place to be, you’re not bereaved, but you’re not not bereaved. You have a Dad but you haven’t got a Dad’
What is Dementia?
Dementia is an umbrella term. It refers to a set of symptoms in which there is a decline in cognitive functioning (i.e. the ability to process thought), beyond that which may be expected from the typical ageing process.
Dementia is not just about memory.
Although memory loss is common in dementia, dementia is not just about memory. Symptoms of dementia often include other cognitive difficulties such as a decline in judgement, reasoning, communication, orientation in time and place, calculation, comprehension and learning capacity. Behavioural and psychological symptoms are also common, such as anxiety and depression, disinhibition, delusions and hallucinations, agitation and changes in sleep and appetite. However, symptoms can vary widely between individuals.
Different Types of Dementia
There are many different types of dementia. Just about any disease that impacts the brain can lead to dementia. However, the two most common causes are Alzheimer’s disease and vascular dementia.
These different causes are associated with different pathologies and symptom patterns. For example, Alzheimer’s disease involves shrinkage of the brain and is particularly associated with a decline in memory for past events and difficulties with spatial navigation. In contrast, vascular dementia involves restriction or loss of blood supply to the brain, which destroys small areas of brain cells. This type of dementia is more associated with slowed processing and a decline in the high-level cognitive skills that we use to control and coordinate our behaviour. It is important to note that the particular pattern of strengths and difficulties can vary widely between individuals.
Understanding Dementia
Historically, dementia has been largely understood from the perspective of a medical model and thus considered to be caused by deterioration in the parts of the brain that control cognition and behaviour. As a result, it has typically been treated and managed using medication.
However, there is no direct relationship between the degree of brain pathology and the severity of dementia symptoms. There are lots of factors, other than brain pathology, that can lead to improvement or deterioration in symptoms. The biopsychosocial model accounts for these other factors (Spector & Orrell, 2010). This way of understanding dementia acknowledges that there are some aspects that cannot be changed, whilst enabling us to see dementia as something whereby change and improvement is possible. This is often where psychologists come in.
There is no direct relationship between the degree of brain pathology and the severity of dementia symptoms.
Fixed Factors
Psychosocial fixed factors include factors such as education history and IQ, the experience of major life events (e.g. bereavement) and personality traits. For example, evidence suggests that education and IQ may be linked to dementia presentation, such that those with higher levels of intelligence are more able to compensate for the physical damage in the brain, meaning that the symptoms become apparent later in the illness.
Biological fixed factors include things like age, genetics and physical health. For example, the risk of dementia doubles every 5 years from the age of 65. With an ageing population, we can see how the number of people with dementia is set to increase so much over the coming years. Genetic factors are also relevant, particularly for early onset Alzheimer’s. Conditions such as heart disease and high blood pressure are also associated with increased risk, particularly of vascular dementia.
Finally, sensory difficulties (for example with hearing or sight), which are often common in older age, can impact functioning and contribute to delirium. It is therefore important to make sure that the correct glasses/hearing devices are used by people with dementia, in order to maximise their functioning.
Amenable Factors
There are lots of psychological, social and biological factors that are amenable to change and can thus lead to improvement.
Use it or lose it. Mental stimulation is thought to reduce the deterioration in dementia. Links have been reported between engaging in mental activity and improvements in memory and thinking skills.
Social Support. Although the occurrence of life events is often out of our control, our response to these events (and therefore the impact that they have on us) can be influenced by factors such as social support. This is the case for people with dementia and also for those caring for someone with dementia. People who live alone or who have limited social networks are at greater risk of dementia. Higher levels of social support have also been associated with lower levels of depression and greater quality of life in family carers of people with dementia (Cartwright, in press).
Mood. Depression affects approximately 20% of people with dementia and can lead to further withdrawal, which can exacerbate symptoms. Treating depression early is therefore important.
Physical Health. Infections (e.g. urinary tract infections) can lead to increased confusion. Pain caused by physical illness can also impact mood and reduce motivation. Both of these factors can be treated with appropriate medical care. Other physical health problems (e.g. injury as a result of a fall) could limit someone’s ability to engage in activities, which can reduce stimulation and lead to further deterioration.
Reducing the Risk of Dementia
There are also various lifestyle factors that can reduce your risk of developing dementia. For example, physical activity has been associated with a lower risk of dementia compared to no exercise, particularly in the case of Alzheimer’s disease. Doing regular physical exercise can therefore reduce your risk of dementia. The Alzheimer's Society recommend doing either 150 minutes of moderate aerobic exercise (e.g. brisk walking) or 75 minutes of vigorous aerobic exercise (e.g. jogging) per week as well as resistance activities, to work your muscles, twice a week.
Other factors, such as not smoking, eating a healthy balanced diet, maintaining a healthy weight and only drinking alcohol in moderation can reduce the risk of dementia (as well as other serious health conditions).
What Support is Available?
If you are worried that you or a loved one might have dementia, it is best to discuss this with your GP, who may refer you to a memory clinic for further assessment. There is no single test of dementia and diagnosis is often based on information from the individual and others who know them well, tests (e.g. blood tests) to exclude other causes of the symptoms, cognitive assessments and brain scans. Recent research reported by the BBC indicates that a blood test measuring protein p-tau217 could be used to identify early-stage Alzheimer's disease before symptoms appear, however further research is required before this could become clinically available.
Benefits of an accurate diagnosis that are often reported by people with dementia include having an explanation for symptoms, receiving treatment and support and being able to make plans for the future. Below is a video of people with dementia speaking about the benefits of early diagnosis.
Regarding treatment, the UK government NICE guidelines on the management of dementia recommend offering a range of activities to promote wellbeing that are tailored to the individual’s preferences. A group called Cognitive Stimulation Therapy is also recommended for those with mild to moderate dementia. This is an evidence-based program that aims to stimulate and engage people with dementia. It has been found to lead to significant benefits in cognitive functioning and quality of life. There is also an individual version of this evidence-based intervention, which can be facilitated by family carers or professionals. Further information about this manual (including how to purchase it) can be found here.
Support for Family Carers
The large majority of people with dementia are cared for at home by a relative or friend. Caring for a loved one with dementia can be extremely challenging. Therefore, providing support for family carers is a key component of high quality dementia care. Unfortunately, in practice, there are often limited resources for family members. The types of interventions offered to family carers may include education and information about dementia, coping strategies, techniques to manage behaviour that challenges, and therapeutic support.
The NHS are currently rolling out an evidence-based intervention called START (Strategies for Relatives). Over 8 sessions, family carers discuss different topics, make plans to try things out in between sessions, learn new ways of reducing stress, and learn strategies to put into practice during the sessions and in between sessions. The sessions also include practical information, such as options for care and legal issues in care planning. Extremely comprehensive session manuals, with lots of information and strategies, can be downloaded here free of charge.
You can also find contact details for your local talking therapies service here in order to find out if the START program is available in your local area.
Further Information and Resources
Reduce the stress of caring about how you manage mental health
After a 3-months long open dialogue with over 20 HR directors and senior managers, Amplify recently launched the HR and Manager Consultation programme, a pioneering service that specifically helps HR teams and managers reduce the stress of caring about how they manage mental health at work.
References
Abbott, A. (2011). Dementia: A problem for our age. Nature, 475(7355), S2-S4. https://doi.org/10.1038/475S2a
Cartwright, A. V. (in press). Validation of the Multidimensional Scale of Perceived Social Support (MSPSS) for family carers of people with dementia. Clinical Psychology Doctoral Thesis, Department of Clinical, Educational and Health Psychology, University College London.
Chaplin, R., & Davidson, I. (2016). What are the experiences of people with dementia in employment? Dementia, 15(2), 147-161 https://doi.org/10.1177/1471301213519252
Hall, M., & Sikes, P. (2017). "It would be easier if she'd died": Young people with parents with dementia articulating inadmissible stories. Qualitative Health Research, 27(8), 1203-1214. https://doi.org/10.1177/1049732317697079
Spector A, Orrell M. (2010). Using a biopsychosocial model of dementia as a tool to guide clinical practice. Int Psychogeriatr. 2(6), 957-965. doi:10.1017/S1041610210000840