Involving people living with dementia in decisions about their care
Case report


A report published by the Alzheimer’s Society in 2013 found there were about 815,000 people living with dementia in the UK (corresponding to a prevalence of one in 14 in people over 65 years old), and this number is expected to increase to 1.1 million by 2025.1

In November 2017, there were 456,739 people on general practice registers with a formal diagnosis of dementia, up from approximately 290,000 people in 2009-10,with most of this difference accounted for by an increase in diagnosis rates. Despite this improvement in diagnosis, around one in three people with established dementia remain unrecognised, and around half of people living with dementia in England do not feel they are getting sufficient post-diagnostic support.3

Dementia describes a range of cognitive, behavioural, and psychological symptoms that can include memory loss, problems with reasoning and communication, and change in personality which impair a person’s ability to carry out daily activities.4 Diagnosis of dementia is not straight forward but complex and symptoms varies from person to person. This becomes more complex when it is of young onset dementia as the symptoms can be part or even on its own be signifying a different illness.

It is important to differentiate people especially of young onset who present with memory problems due to their anxiety or their family member’s anxiety. The first aim is the separation of the worried-well: often made complicated because the worry is generated by a positive family history. For a significant number, follow-up over time will be the only way of making absolutely sure that subtle complaints do not herald the onset of an organic syndrome.5

However some people may have pseudodementia where symptoms of depression mimic dementia. As these groups are not mutually exclusive, it is not uncommon to instigate a trial of antidepressant therapy in parallel with investigations for organic causes of cognitive complaints. Follow-up is again the key to separating depression with cognitive symptoms from dementia with prominent affective symptoms.5

Even when all these are excluded, there remains the complex task of identifying subtle changes in these group of young onset dementia. Also, the earlier the diagnosis, the better their quality of life. One of the areas which is always forgotten from a management point of view is that the external services and support available do vary significantly depending on whether they are diagnosed; whether before or after 65. This is where it is extremely crucial to involve family members and the person throughout the journey from the time of initial referral.



Involving people living with dementia in decisions about their care

People living with dementia can often be left out of decisions about their care, or information can be communicated less than what is needed. People living with dementia also often do not volunteer their own thoughts on their care, so health professionals should actively encourage and enable people living with dementia to give their views and opinions about their care, which may involve modifying ways of communicating and making use of structured tools to support communication.

From the start of the diagnostic process and for the rest of the person’s life, giving people (and their carers and family members) accessible information about their condition, what to expect in the future, and their legal rights make a huge change in their life.

Case report

This is a case study where the active intervention of the subject’s family made it significantly easier and quicker to diagnose the condition.

Our service user was in his late 50s when he showed symptoms of spatial disorientation and visual disturbance, but significantly, no memory problems.

The family first noticed problems with his driving and this became quite noticeable as the person used to be an expert driver. He wife observed him to be veering to the left. Whilst at home he complained of seeing the green stand-by light on the television jumping up and down, while, to his wife, it appeared static.  At work, he was unable to count the stock room boxes and his colleagues often laughed at him. This man was brilliant at his job as an electrician. In the past, he could easily disentangle wires, but began to find this impossible. He was also starting to get lost when driving and slowly unable to follow a road map.

He started making more mistakes while driving, mainly in relation to position. He appeared unable to see the mug when reaching for a cup of tea but could see the grains of sugar near it. Whilst addressing an envelope he compressed the text into one corner. He was unable to fill in a simple form.

He struggled to count and was unable to do simple arithmetic. He was slower descending the stairs when previously he used to run. He initially went to see an optician, as he thought his problems could be due to vision. He could read the individual letters on the chart but could not differentiate between the lines. He was given new distance glasses, and had since had more prescriptions, including bi-focal but nothing helped. Eventually he went to see his GP.

Initially symptoms thought to be due to stress at work and anxiety. He was treated with Sertraline for anxiety in 2012 with no improvement. He was given a course of cognitive behaviour therapy for anxiety but attempting to fill in worksheets, as part of this, actually this made his anxiety worse. He was then given Mirtazapine, which showed a very slight improvement.

He was observed to be drifting to the left whilst driving, walking and swimming. This was thought of as possibly weakness in his muscles.

He stopped working in 2013 as it became impossible to continue.

During some of his assessments, it was observed that he was unable to put his name on a form and he was noted to get more anxious because of this. There were some concerns as to whether he was developing a brain tumour and therefore he was then referred to the specialist neurology centre.

He was under the neurologist, neuropsychiatrist and neuropsychologist for around three years. During this period, he had various memory and cognitive tests, also blood tests and scans. It was observed that he could not draw a clock. He usually produced a circle with the numbers scattered at random outside the circle. It appears that his visual processing difficulties were never picked up as an issue. His test results were inconclusive due to his anxiety. In the absence of a clear memory problem he was told his problems were not possibly due to dementia, but anxiety.

At this time his wife’s sister (who is a neurology specialist occupational therapist) knew of the condition of posterior cortical atrophy, although she had never seen one. She suggested the possibility of this diagnosis based on observations of his spatial awareness problems and other visual difficulties in the domestic and social environment. Following this discussion, his wife started to gather information on posterior cortical atrophy with the aim of understanding more about this rare type of young onset dementia. She felt many of his symptoms did correspond to this condition. She then enquired with the neurology team if posterior cortical atrophy was ruled out in this presentation. A review was arranged and he was given the diagnosis of Alzheimer’s disease with an emphasis on posterior cortical atrophy. He was then prescribed Donepezil. This was in 2015.

Subsequently, both the person and his wife received aftercare help and information from the local memory services. Both are attending the support group for PCA in London every four months where they meet with experts and people with similar problems.

The family felt that initial symptoms were missed by various teams and this led to delays in his diagnosis. They feel that earlier assessment and management of his condition could have helped the family take advantage of the window of opportunity to do memorable activities before the condition became too far progressed. However, they are glad they got his diagnosis before the age of 65 as they get a better support package from social services than if the diagnosis had been delayed until after this age.


We have reported this case as a prime example where the referral pathway and service delivery could have improved to meet user needs. It shows the importance of awareness of dementia and various types, among various medical specialities as this could easily be missed. Also, it confirms the importance of involving patients and carer early in their diagnosis pathway and how they need to be involved whole through the patient journey of their illness.

The case denotes the importance of liaising with other specialities in ruling out other conditions if there is any doubt and hence able to come to a definite diagnosis at the earliest. It shows how services need to be geared for diagnosing, assessing and managing people with young onset dementia with having a specialised unit or team to cater to their needs. Still many a times these people are seen with ‘the rest of the dementias’ when their presentation and needs are so different. Hence many a times the diagnosis can be missed or their needs are not understood completely. This leads to huge gap in services with diagnosis and the important support being delayed.

Sometimes it takes quite a number of years to get the diagnosis leading to loss of quality of life, causing huge amount of anxiety both for the person and their carers.  A great time of their life is left with the ambiguity and anxiety on what they are having and also having to wait for a diagnosis.


The diagnosis of young onset of dementia has a huge impact on the person as they could have dependent children and can be working full time. They could even have elderly parents for whom they might be providing care and support. The diagnosis can lead to cessation of their main income as they would have to stop work. This would have a huge impact on the person as well as the people around who are dependent on this person for their day to day activities. Many at times, people report that the impact would not be just financially but also on their role in the family.

Hence any service dealing with them should be aware of the difference of presentation and also the way it can impact in these client group. The service should be tailored for their age, should be person centred and all information given to them should be age appropriate and not be just given generic dementia information. There should be clear pathway for referral and assessment of these client group. Also, assessment and diagnosis should be expedited so that they get better and quicker support compared to the others. Advice and support should be timely and appropriate. Carers and family should be involved early enough and they should be supported in regards diagnosis as well as in their socio-economic needs. The person and family should be offered pre and post diagnostic support.

There should also be close liaison between primary care and secondary care to help the person and their family. The service should make sure that the person and family have access to voluntary or third sector agencies.

Due to the complex nature of the illness, the young onset dementia service should have close links with other specialities like neurology, radiology, geriatrics and there needs to be direct referrals to these to facilitate quicker and better diagnosis.

As been advocated by the Royal College any new service should have active participation both from patient as well as carer group so that they can help  services give the most appropriate  care for this group. Also, other agencies like the Royal College of Psychiatrists, Alzheimer’s society as well as the government should give enough importance for recognition as well as improving the awareness of illnesses like young onset dementia and even rarer cases like posterior cortical atrophy.

Acknowledgements: We would like to thank DA and his family for supporting us with writing his case history to increase awareness of the difficulties with young onset dementia.


Dr Manoj Rajagopal, Consultant Psychiatrist, Central Lancashire Community Mental Health for Older people, Lancashire Care NHS Foundation Trust.

Dr Sheeba Ninan, Consultant Psychiatrist, West Lancashire Older Adult Integrated Team and MAS, Ormskirk 


  1. Alzheimer’s Society. Dementia UK report. Alzheimer's Society, 2014.
  2. NHS Digital. Recorded dementia diagnoses, November 2017.
  3. Alzheimer’s Society. Dementia 2015: aiming higher to transform lives. Alzheimer's Society, 2015.
  4. Dementia: assessment, management and support: summary of updated NICE guidance. BMJ 2018;361:k2438 doi: 10.1136/bmj.k2438 (Published 20 June 2018)
  5. Peter Nestor and John R. Hodges.The clinical approach to assessing patients with early onset dementia.