EMDR Therapy Quarterly

Introduction

Dementia is an umbrella term that describes a decline over time in cognitive functions such as memory, thinking skills, understanding and speech. Dementia has enormous, personal, societal and economic effects. According to NHS England (2024), 481,783 people have been diagnosed with dementia as of April 2024, and of those diagnosed, 33,711 received their diagnosis before the age of 65. The Alzheimer’s Society estimates that 900,000 people in the UK actually have dementia, which may rise to 1.6 million by 2040. Of the 900,000 people with dementia in the UK, over 78,000 are under the age of 65, and there are 25,000 from Black, Asian and minority ethnic groups. One in six people over the age of 80 has dementia.

The UK charity Dementia Carers Count suggests there are 700,000 family carers of people with dementia in the UK, and this figure is projected to rise to 1.6 million by 2040 (alongside the increase in people who will develop dementia). Two-thirds of people with dementia in the UK live at home, most supported by unpaid carers. The number of people who will have left employment to care for people with dementia is set to rise from 50,000 in 2014 to 83,100 in 2030.

There are different subtypes of dementia, and the distribution of disease type can be seen in Figure 1 below.

Each subtype has a specific neuropsychological profile of behavioural and psychological symptoms of dementia (BPSD) that pose unique challenges to families, carers and care staff. We considered each subtype and whether EMDR can benefit people with dementia. We also considered how EMDR can support family, carers and care staff to manage these symptoms.

Choosing targets for EMDR

There are a range of experiences and symptoms that can lead to a traumatic event, both for the person with dementia and for those who care for them. We considered the disease progression and that it is also possible for people to experience more than one subtype of dementia simultaneously. It could be argued that there is more scope for standard protocol EMDR interventions at the early stages of dementia due to cognitive abilities being more intact. As the disease progresses, the need for adapted EMDR approaches increases, as does the increased difficulty of establishing a therapeutic alliance and/or pinpointing specific experiences to target.

Studies have shown how EMDR has been used in the early stages of dementia to address previous psychological trauma, such as the trauma of being diagnosed with the disease (Ruisch et al., 2023; Amano & Toichi, 2014.). In addition, EMDR has also been used to effectively reduce the BPSD by addressing the content of ruminations as well as trauma related to hallucinations and delusions, which in turn reduces these symptoms (Adams et al., 2020).

Past targets

Considering the EMDR three-pronged approach of past, present and future triggers (Shapiro, 2017), the past experiences to consider targeting with the standard protocol could include:

• History of powerlessness or feeling out of control: These experiences may underpin the individual’s reaction to receiving their diagnosis.
• Prior experience of dementia or illnesses in the family: For example, witnessing a parent or loved one’s experience with dementia may contribute to present and future fears about the progression of their own disease.
• Early attachment history: Experience of being cared for as a child, particularly if this involved abuse or neglect, may influence their future fears as the need for care arises as the disease progresses. Additionally, re-enactment of attachment frustrations may take place between the individual and their carer, which could give scope to other possible EMDR targets.

Present targets

We recommend a collaborative person-centred approach to working with both the individual and their carers. Present memories/experiences to consider targeting for EMDR could include:

• The moment of diagnosis with the disease.
• Moments of self-awareness linked to specific symptoms of dementia, such as incontinence, hallucinations/nightmares or moments of challenging behaviour.

For carers, present EMDR targets can include:

• When they first experienced their loved one experiencing symptoms such as incontinence, significant memory loss or challenging behaviour.
• Moments of impact when the loss of their loved one becomes clear due to how they are behaving, such as witnessing significant changes in their personality.

Adjustment and loss

Both the individual with dementia and their carers are likely to experience a period of adjustment and transition in relation to the dementia. This process can be considered in relation to the literature on the grief and loss cycle, described by Kübler-Ross (1969).

At the early stages of diagnosis, there may be denial, shock and avoidance, leading to possible anger for both the individual and their carers/family. The moment of diagnosis can be a trauma memory in its own right. This may present a key initial target for EMDR processing to help foster increased understanding and acceptance of the diagnosis and to focus on coping both now and how to plan for the future. Additionally, as the individual moves through this cycle, they could compare themselves to what they were or could do in the past. This comparison and past focus can be a source of significant anger and sadness for the individual and their carers. EMDR may be useful to target a recent experience of a failure or the BPSD to help reduce the emotional and possible traumatic impact on individuals and their carers, and because of adaptive information processing (AIP) increased resilience and coping strategies.

Another source of concern for carers can be about what would happen if they were to develop dementia themselves. A systematic review published in The Lancet by Livingston et al. (2020) explored the most effective, evidenced-based ways for both preventing dementia and providing interventions for those affected. Figure 2, which is from this article, highlights the importance of maintaining a good diet, stopping smoking, reducing alcohol, preventing and treating depression, and increasing exercise and social contact, all of which can contribute to reducing the risk of developing dementia.

It is important to use this information sensitively and only when appropriate as people who follow a healthy lifestyle can also develop dementia and we would not want this information to be used in a shaming way. However, this diagram may be useful to share with carers to guide interventions on how to increase their social contact with others or peer support groups. One study used an EMDR Integrative Group Treatment Protocol with carers (Passoni et al., 2018) and showed that the intervention reduced stress-related symptoms, anxiety and depression in caregivers of people with dementia.  

Future targets

Considering the third prong of the EMDR approach (Shapiro, 2017) future targets for people with dementia and their carers can include:

• Identifying three qualities –to draw resources from the individual’s and carer’s life experiences to cope with the coming changes related to dementia. These qualities could include resilience, determination and control both in the past and in the current moment. These positive qualities can then aid both the person with dementia and their carer in planning for the future and the type and level of care they wish to receive.
• Future template – building on the three qualities, it may be possible to use a future template related to seeing themselves coping with the disease by drawing from their resilience and ability to cope with adversity.
• Flash forward – this technique could be used to target the feared future worst-case scenario for the later stages of the disease and/or death. This should only be considered if the individual or carer is catastrophising about the future to the point that it is interfering with their ability to cope with the present.

Other targets for EMDR with carers may arise related to the attachment dynamics of the family and their relationship with the person with dementia. These targets may include potential past attachment trauma memories that may arise for carers. These memories could also be useful targets for EMDR reprocessing, as it may help to reduce the levels of carer depression, anxiety and burden associated with managing the BPSD. In addition, future planning in relation to the later stages of the disease, death and possible early grief symptoms, such as denial and anger, are also important. The role of EMDR here could be to draw on resources such as the three qualities, future templating care or funeral planning, as well as processing recent carer experiences, such as witnessing the individual forgetting who they are.

Potential challenges of using EMDR with this client group

Whilst different subtypes of dementia have specific symptom profiles, every person with dementia and their carers go through their own unique journey and mix of challenges. This can make it difficult to identify if the individual is at an early, mid or later stage of the disease. Another factor to consider is that, with an increasing number of people with dementia living alone, how this creates challenges in remembering appointments and attending to personal care/health needs and risk. Assistive technology is one possible source of psychosocial intervention in this situation, and the evidence base is growing. (Rai et al., 2022). Other considerations, drawing on Neuro EMDR (Hutchins & Proudlock, 2023), could include cognitive adaptations to the standard EMDR protocol, such as using external cues for safe/calm space work, shorter sets of bilateral stimulation, and offering more assistance in identifying suitable negative and positive cognitions.

Severe stages of dementia

As an individual’s dementia progresses, the standard protocol may need to be adjusted, as they may not be able to engage in a formal therapy session or answer specific questions in the assessment phase of EMDR. At this stage, we recommend using the on-the-spot EMDR method (Amano & Toichi, 2014). This has been adapted for use with individuals who present with behaviour that is challenging in inpatient settings. The authors used the following approach:

• Phase 1 – history: As this was not possible from the client, the therapists drew information from the client’s care plan as well as collateral information from family members and/or life story work.
• Phase 2 – stabilisation: Due to significant memory impairments, clients would often forget the therapist after seeing them, so the therapist would reintroduce themselves each time they saw the client and would draw from previous sessions and/or collateral information for safe space, etc.
• Phase 3 – assessment: The on-the-spot EMDR method assumes that the challenging behaviour presented by the client is the traumatic material, as they are unable to communicate the specifics of a target image, negative cognition in relation to the trauma memory and the positive cognition in relation to the trauma memory, etc.
• Phases 4, 5, 6 and 7: The therapists used tactile bilateral stimulation rather than eye movements to do reprocessing, due to eye difficulties in older age and the cognitive demand of eye movements.
• Phase 8: Re-evaluation was not possible by asking clients directly, so the therapists measured the re-evaluation through antecedent, behaviour, consequences (ABC) chart data and reports from staff on the frequency and severity of the challenging behaviour.

The authors saw a reduction in both the frequency and severity of challenging behaviour (Amano & Toichi, 2014; Amano & Toichi, 2016). It may be possible to teach and support carers to use aspects of this protocol to de-escalate challenging behaviour and to help the person with dementia regulate and reduce distress.

Summary and recommendations

This article proposes a range of methods on how EMDR may benefit those with dementia and their carers/families. Dementia is a complex and significant condition, and the authors aim for this article to act as an initial guide to inspire practitioners to use EMDR to help improve the quality of life for this client group.

Currently, there is a limited evidence base supporting the use of EMDR for individuals with dementia, and we greatly encourage further research into this area. When considering future research options, we recommend not only measures of symptom reduction or reduction of challenging behaviour but also measures of physiological responses in clients before, during and after EMDR processing. For example, studies could be carried out using wearable technology such as smart watches or socks to investigate whether EMDR has a long-term impact on the physical health and sensory integration of people with dementia.

Additionally, we recommend focusing on the potential effects of EMDR on sleep quality and overall quality of life.