Julie Rees gives a physio’s perspective on working with patients who have younger onset dementia
Patients with younger onset dementia (YOD) have been diagnosed with a form of dementia under the age of 65. According to an Alzheimer’s UK estimate, there are at least 42,000 people with YOD in the UK, or more than five per cent of all those with dementia. Compared to their older counterparts, people with YOD are more likely to have problems with movement, walking, co-ordination or balance.
Their needs and expectations are often different from older patients. They can, for example, find it more difficult to accept their diagnosis and come to terms with losing their skills and function at such an early age.
As the disease progresses differently in younger people with dementia, patients are more likely to have a rapid progression and be much more complex and challenging in their presentation. In addition, the rarer types of dementia are more commonly diagnosed in patients who have YOD.
As a physiotherapist working with these patients my main focus is on improving independence and function, and promoting their quality of life in the community for as long as possible. I also offer support to patients’ families or carers. I am a band 6 physiotherapist working 18.75 hours a week, so it is sometimes difficult to resolve problems quickly. My role covers patients in the community as well as the day hospital and inpatients on a specialised unit. I currently have 30 patients on my caseload and, on average, I receive three new referrals each month and see from see from one to five patients in the community every week.
Treatment is aimed at improving and maintaining the patients’ mobility and preventing falls, both in the community setting and in hospital. In addition, I treat musculoskeletal conditions, neurological symptoms and respiratory problems. I also help to manage any postural or seating issues, and support patients needing palliative care. To facilitate my role, a half-time band 4 therapy technician works alongside me to help me provide physiotherapy care.
Like any physio service nowadays we strive to demonstrate the value of our service, though this is not always easy.
Exercise is helpful
We encourage patients with YOD living in the community to participate in exercise as it has been suggested that physical activity is effective in helping to improve quality of life for people with mental illness. Evidence indicates that it improves self-esteem and cognitive functioning and benefits include improved mood, increased energy and better sleep (Kaur J et al 2103).
We liaise with physiotherapy technicians in local leisure centres who specialise in exercise therapy. They provide patients with personalised exercise programmes. In addition, we support YOD patients to join walking programmes in the community and we have also made links with ‘Pedal Power’, a cycle centre in the community for disabled people living in Cardiff.
In the more advanced stages of dementia patients’ needs change and it is often challenging to engage those patients who have lost their cognitive abilities and are unable to follow instructions. To encourage patients to participate in treatment interventions we use alternative methods to achieve treatment goals. Dancing and singing to music have been effective ways to engage patients in physical activity. Going outdoors for a walk often works well as do activities involving automatic responses such as cycling, throwing and catching, or kicking a football. We have found that other interventions such as multi-sensory stimulation, reminiscence therapy, a therapy called Sonas, Jabadao sessions or games such as skittles, hoopla and boules can also be effective.
Establishing eye contact
Highly developed communication skills are essential with all patients living with dementia. Encouraging eye contact is important as well as keeping sentences short, speaking slowly and clearly, and, when possible, reducing any background noise. It is important to be aware that although patients may have lost their factual memories they still retain their emotional memories. This means that although patients may not remember a therapist’s name or face, they will remember the experience of the treatment session and whether it has been positive or negative.
It has been difficult to measure the effectiveness of our treatment due to the degenerative nature of dementia. However, the use of subjective data can often be a useful way to capture our effectiveness and Jackie’s story (left) illustrates how our service has benefited one patient in particular:
We hope that our service will continue to develop to improve the wellbeing of our patients and to promote healthy lifestyles. If funding becomes available and working with our third sector colleagues, we plan to start up a weekly post-diagnosis exercise group at a local leisure centre to encourage more patients in the early stages of their illness to maintain their fitness levels. We also believe a weekly cycling session in the community could benefit patients by making use of the facilities provided by the charity Pedal Power.
Origins of the service
Proposals to create a specialist dedicated service for people with YOD were first set out in 1994. However, it wasn’t until 2011 that the National Dementia Vision in Wales was launched, leading to the creation of the Cardiff and Vale Health Board YOD service.
The board initially appointed a dementia care adviser and two family support workers, and set up clinical lead and consultant sessions. This formed the basis of the YOD community service.
The service has evolved and now has a full multidisciplinary team which supports patients and their families from diagnosis through the course of their illness.
The service provides a post-diagnosis support group to help patients come to terms with their diagnosis and to give advice on how to manage their memory problems.
New patients are supported in the community by two cognitive stimulation therapy groups known as friendship groups. Both of these are held once a week.
Family members can also to attend carers support groups which give information, education and advice. Ty Hapus, a charitable service affiliated to the Alzheimer’s Society, provides a drop-in Moon Dance Cafe offering advice and support as well as day care for patients with YOD living in the community.
If patients need hospital care, they are admitted to acute dementia care wards. However, if possible, patients are maintained at home and so links have been made with the community crisis intervention team for patients in the community with mental health problems.
Patients with more complex or challenging behaviours are admitted to a specialist unit at Barry Hospital for extended assessments. They can then move on to an appropriate care home when their behavioural or psychological symptoms have become stable. fl
Kaur J, Masaun M, Bhatia MS. Role of Physiotherapy in Mental Health Disorders. Delhi Psychiatry Journal 2013;16: 404-8.
A guide titled ‘What is young-onset dementia?’ is available at www.alzheimers.org.uk
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Jackie (who asked for her surname to be withheld), 50, has posterior cortical atrophy – a rare form of dementia affecting vision and perception.
Jackie was admitted with symptoms of vertigo and placed on a general medical ward. While there she deteriorated, becoming immobile and spending all her time in bed. She could only tolerate having the head of her bed elevated for meals.
In collaboration with the physiotherapists from the medical team, we carried out a joint session with Jackie and three members of staff. We managed to sit her on the edge of the bed with staff on either side and behind her and an armchair in front of her to help control her sensation of dizziness. She then managed to stand up with our assistance for a short time. This was the first step for Jackie, as she had been in bed for a few weeks.
Shortly after this, Jackie was transferred to a dementia care ward and started a new medication to help control her symptoms of dizziness.
We continued to treat her. Initially three physiotherapists were involved in assisting her to stand using a standing hoist. Jackie quickly progressed to standing with hand-held assistance. She carried out functional exercises and then started to walk using a rollator Zimmer frame. She soon became independently mobile with supervision. As Jackie’s mobility improved so did her confidence and, instead of staying in her bedroom all day, she sat in the lounge with the other women on the ward.
However, a major hurdle for Jackie was the stairs. As her bedroom at home was upstairs she needed to achieve the goal of using them, as it was thought she would not manage a stair lift due to her perceptual problems. Jackie worked hard to overcome this obstacle and we encouraged her to count the number of steps as she ascended or descended the stairs as a distraction technique to reduce her anxiety.
We then took Jackie on a home visit where she successfully managed the stairs.
Jackie has now been discharged home with support from the community resource team. She commented that the physiotherapy staff had really helped to get her back on her feet again.
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