‘Helping people feel valued, supported and listened to… that can become lost’

I enjoy working with people with dementia. People often don't believe that, perhaps due to a misconception of what life with dementia can be, or a more general misunderstanding of what working in psychology is like. They just struggle to accept it can be as interesting, fulfilling and uplifting as working with any other group of people. I felt the same until I tried it myself.

At 19 my university funding was suddenly reduced and I needed to make some extra money, so I started working in a nursing home in Hampshire, where approximately 70 per cent of the residents had a diagnosis of dementia. From my first day at the home, I knew I'd severely misjudged the job. I had assumed that working with people with dementia would be consistently difficult and demoralising. The bonds I formed with the residents changed my mind very quickly, and I found that I enjoyed the challenge, looking at each resident as an individual and working to understand their motivations and what they were facing.

Wanting to progress within psychology, I knew I couldn't work as a Care Assistant forever. Once I finished with university I moved up to Cardiff to pursue a job as a Primary Mental Health Worker. It was a refreshing change to work with the general adult population, and to focus on something other than dementia care. But although I still enjoyed it, the work hadn't gripped me in the same way as my Care Assistant job had done. When an opening for an Assistant Psychologist in a Specialist Dementia Intervention Team presented itself, I felt like it was made for me.

An introduction to the team

The Specialist Dementia Intervention Team (SDIT) is based in Cwm Taf Morgannwg University Health Board within Wales and is a large Multi Disciplinary Team consisting of nurses, health care support workers, occupational therapists, assistant psychologists, associate practitioners and a practitioner psychologist. The team works across a wide geographical region covering 46 care homes, and is also active in the community. The team is psychologically-lead and takes a non-pharmacological approach to help carers to understand behaviours that challenge, lower the need for care home and hospital admissions, and reduce the inappropriate use of psychotropic medications.

The intervention that the team uses is derived from the Newcastle Model for Behaviour that Challenges in Dementia, using formulation and subsequently producing behaviour plans across a 12-week period. For example, a common referral might relate to physical aggression during personal care. We would look to observe a few incidents of personal care and provide staff with ABC charts for the days that we are not there. We may be looking out for unmet needs. Does the person need independence, and feel they have lost this during personal care? Perhaps they need to be free from pain before personal care can begin? We would work with care staff to help them understand these sorts of unmet needs and to assist the person to realise them – encouraging them to offer choices, allow the person to be move involved in their personal care, ensure that dignity is protected.

From my first day at the home, I knew I'd severely misjudged the job. I had assumed that working with people with dementia would be consistently difficult and demoralising.

Of course, as with any mental health service, the exact timing or structure of our intervention does not always follow our plan. The vast majority of the team's referrals are for those aged 75+ which means that in addition to mental health, we also need to navigate physical health concerns. If one of your clients isn't eating well, is that due to a cognitive complication meaning that some slight changes in the presentation of food will help? Or is it a physical concern to be addressed before your intervention begins?

Part of what makes working within a team such as this so interesting is that a referral for a person with dementia very rarely only concerns their dementia. It's not uncommon for depression, anxiety, trauma or physical health to heavily influence a person's presentation – so it takes more than just an understanding or explanation of dementia to address any behaviours that challenge. Add to this that the person themselves may not be able to communicate what they are feeling, and a formulation can often feel like detective work.

Something that particularly seems to surprise some of the people we work with, and anyone I explain the team to, is that we are a carer-focused intervention. So although the team will work with the person with dementia and aim to form a relationship with them to help understand their presentation, the majority of our work is based around the approach of the carer, and behaviour intervention plans centre around the modification of their behaviour, not the person with dementias. Referrals for us commonly involve verbal aggression from the person with dementia, and when we work with carers on this we may observe their approach and the way in which they interact with the person. Often in these instances, we then provide psychoeducation to the carer and suggestions for de-escalation or information on ways to tailor communication for a person with dementia, meaning we are working with them on their approach and behaviour to address the behaviour that challenges. Working in this way means that not only are members of team well versed in dementia care, we often also have to have a good understanding of the role of family dynamics, of workplace culture and de-escalation.

The other side of the looking glass

When I first started working as an assistant in this team, my manager explained that I would be working as a lead on cases instead of as a support worker, and I panicked for a week. I felt as though I was on the 'other side of the looking glass'.

My previous experience was a huge influence on the way I decided I wanted to work. I'd worked as a care assistant and at the time I'd experienced people external to my nursing home come in, spend five minutes with a resident, and then give me advice on how to manage them that I'd either already trialled, or was entirely inappropriate. I was determined not to make that mistake. I strongly believed then, and do now, that the people that spend all day with the person on a regular basis are the expert on them, I'm simply the dementia specialist. It's important that we put the two together.

However, that isn't to say that the ideal I try to hold isn't challenged. It's not uncommon for us to meet with a level of resistance to our plans and it can be difficult to remain compassionate and remember that these people, both staff and family members, are likely tired, stressed and undervalued. We can present the best written formulation and intervention plan filled with what seem like simple solutions, but it's important to remember that the solution we suggest may just be one task too many, and it's just as much a part of our job to make this manageable as it is to provide the plan itself.

Many view working with older adults as difficult because the interventions may not be needed for long, or in the case of a person with dementia may need constant adjustment. For me, that's what makes part of the work valuable.

Often, compassion and understanding for the people you work with can waver over time or with additional personal stress, and recently I was reminded of exactly why these qualities are so vital in the work that we do.

A trip down memory lane

In the latter half of last year, I suddenly become a primary caregiver to my Nan. I hadn't provided any care at all, let alone palliative care, for over three years. The reminder of how it feels to care for another person, putting your own needs second, was difficult to digest. I'd never needed to care for a relative, only ever a resident at work, and the difference was stark.

All of a sudden, I was reminded of just how difficult it can be to manage professionals when you're having to manage your own emotions and keep another person at the forefront of your mind at all times. There were professionals that visited us who completely disregarded our opinion, and insisted on things that we knew weren't right. It was frustrating to be treated as if I had no knowledge given my profession, and that my Mum is a registered nurse. More than that, we felt that the personal knowledge we held for Nan was irrelevant in the face of the medical knowledge that some of the professionals felt they had over us.

Once Nan had passed away and I returned to work, I was shocked at how different everything seemed to be. I felt like I had started the job all over again, with a renewed respect for carers and a reminder of the ideology that I set out with: that they are the expert on the person, and I am simply the one with the specialist knowledge on the condition.

I also remembered why I enjoy working with people with dementia, with older adults, and in my team. Many view working with older adults as difficult because the interventions may not be needed for long, or in the case of a person with dementia may need constant adjustment. For me, that's what makes part of the work valuable.

To help a person with dementia to be understood, or to help their carers to understand them, is immensely rewarding. And to contribute towards the care of a person in the later part of their life when they begin to need support from others is humbling and an honour. I'm also lucky enough to work in a team full of like-minded people, on interventions that we all feel passionately about, which is something that anyone would appreciate.

Looking forward

Although I have always felt that the last years of a person's life are just as valuable as the others, my experience has completely changed the way that I view those final years, or even days. I am emboldened to help people feel valued, supported and listened to – something we always strive for, but can become lost as the work goes on.

Some referrals are tough, and some of the people I work with will continue not to agree with me when I present them with a plan. There are days when we find we manage to decrease carer distress or the incidence of behaviours that challenge by a large margin, and days where no matter what we trial the situation does not seem to change. However, in continuing to keep the people with dementia themselves and their carers at the heart of our intervention, we can know that they at least do not feel disregarded by us as professionals, and may call on us again if needed.

I'm hoping to move forward in clinical psychology, onto DClinPsy training and eventually into working as a clinical psychologist. Being suddenly viewed as a service user in a field where I am usually a professional was humbling and immensely frustrating. I will always strive to remember my experience and to regard other's experience as precious.