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Caring for people with dementia and their carers in imaging and radiotherapy

The word dementia describes a disease that results from one or more of a range of over 100 conditions and there are approximately 200 associated subtypes. All of the conditions result in a situation where the person with dementia’s brain function will eventually decline progressively over time. It affects more than one aspect of a person’s thinking and everyday life (for example, memory, language, behaviour, visual processing, hallucinations). There is sometimes overlap of symptoms, for example between depression, delirium and dementia, which can lead to delayed diagnosis. NICE guidance and quality standards for dementia outline and aim to address discrepancies in care [1, 2].

 

The most common type of dementia is a result of Alzheimer's disease, which tends to be a problem that starts with memory. About 50% or 60% of people have Alzheimer's disease in terms of the whole group of people with dementia. The second of the most common types of dementia, vascular dementia or vascular cognitive impairment, can be a result of a person’s problems with blood supply (vascular). A third type, Lewy body dementia, can present in a similar manner to Parkinson's disease, but tends to start with dementia rather than starting with the changes and / or slowing of movement associated with Parkinson's disease. Fourth is fronto-temporal dementia, which affects behaviour and language generally in a younger age group (under 65). 

 

Young onset dementia is defined as pre-65 years old. Approximately 40,000 people per year are diagnosed with young onset dementia [3]. Together, the four most common types of dementia account for somewhere around 95% of all causes of dementia. The remaining 5% causes of dementia are all relatively rare in comparison but all cause progressive changes in thinking and behaviour. The symptoms of dementia are multiple and varied. For example, the symptoms of Behavioural Variant Frontal-Temporal Dementia include changes in a person’s motivation, the development of inappropriate social behaviours, developing obsessive compulsive traits; a loss of empathy; and change in appetite e.g. an increasingly ‘sweet tooth’ or over-eating.

 

Dementia is not an inevitable process of ageing. Indeed, some types of dementia are possibly preventable, for example with lifestyle modification prior to onset of symptoms [4]. Offering advice to the general public that aims to prevent some dementias is important, but at the same time, care must be taken not to stigmatise or blame people who find that they are living with dementia. The terminology and language used when discussing dementia is important, for example, the author of a dementia diary tells us that he prefers to be asked ‘have you any problems with your memory?’ as opposed to enquiries about ‘suffering from dementia?’ [5]. The DEEP network offers advice about the language that people with dementia prefer to be used [6]. A point of patient-centred care is to adapt and use the language that is acceptable for each individual person. 

 

It is estimated that there are currently over 850,000 people with dementia in the UK and that a quarter of hospital beds are occupied by people living with dementia over the age of 65 years old [3]. A result is that a large proportion of people with dementia use the services of imaging and radiotherapy departments across the UK on a daily basis.

 

Each individual experience for a person can depend on the type or cause of their dementia, the stage of the illness, the person’s own personality and, importantly, the way others interact with the person.  Two review stakeholders noted that neuropsychiatric symptoms, such as anxiety, along with cognitive impairments can play a role in how distressing a person may find imaging and radiotherapy departments, for example, being prepared for a scan and the actual procedure itself.

 

People at later stages of dementia may benefit from some of the same environmental adaptations that people with Posterior Cortical Atrophy (PCA) dementia find useful [7], such as ensuring there is good lighting and good colour contrast for objects that need to be perceived clearly. Common examples of visual disturbance in dementia can result in a person perceiving puddles or black mats to be spaces or holes in the ground and trying to step around them. Advice about caring for people with dementia tends to also guide people to provide clear signage with pictorial symbols at eye height, a calm waiting area with provision of activities eg dominoes, connect 4 etc. and clearly differentiated water stations for hydration. 

 

Knowledge of the type of dementia that a person has can be used to tailor interactions, to avoid procedural delays and to try to avoid causing distress to that person. For example, a person with visuo-spatial difficulties might find it difficult to follow instructions of “up” and “ down” or “left” and “right”. This does not only apply to “left” and “right” in space but also to body segments such as “can you move your left foot”. A person may also find it difficult to find or recognise an examination table/bed, to get up the steps to an examination table or to walk through doors. Members of staff can ask if the person would find it helpful to be guided or alternatively, where verbal directions are not useful, simply ask the person if they are happy to follow the lead of the staff member.

Expert stakeholders noted that staff should reassure patients that staff are able to see them and to communicate with them during examinations and treatment, especially in areas with separate scan rooms (CT,MR,Radiotherapy). People with dementia might also find it difficult to keep track of time while in a scanner and should be communicated with throughout a procedure by a staff member or carer, for example, to inform them of how much time is left until the end of a scan sequence. It is important to tailor care according to the form of dementia the patient has and their personal needs. The staff who will be caring for a person with dementia ideally should be informed about the person’s diagnosis, form and stage of dementia beforehand, to allow adequate preparation and adaptations of care.

SCoR practice guideline

Radiographers and all SCoR members support a significant percentage of patients that have a diagnosis of dementia or undiagnosed dementia. In addition, many of the patients, public and professionals in clinical imaging and radiotherapy departments are also carers for their own family members and friends who are living with dementia. There are therefore many different experiences and needs of the people present within clinical imaging and radiotherapy departments. 

Caring for people with dementia in clinical imaging and radiotherapy: a clinical guideline is an evidence-based set of recommendations for care, available in the SCoR document library. In 2019/2020 a review and update of that guidance found that research studies published since 2015 had main themes about caring for people with dementia in acute settings, centred around the topics of:

 

 

For further and more indepth information SCoR ask members to please read the full guideline which, it is anticipated, will be published in May 2020.

 

Please share any knowledge and good practice that you have with other members of SCoR. Good practice evolves and we would like to keep information up to date. Tracy O’Regan will collate any examples of practice, updates, guidelines etc. that you think are good to share: please email Tracy. This page was updated on 7 April 2020.

 

Signposting to further study and recommendations

 

Centre for Dementia Research at Leeds Beckett University have produced a webinar ‘The cancer care needs and experiences of people living with dementia’ http://www.yhscn.nhs.uk/mental-health-clinic/Dementia.php#cancerdementia

University College London provide access to a free four week online course which introduces useful information about the experiences of people with the ‘many faces of dementia’ https://www.ucl.ac.uk/short-courses/search-courses/many-faces-dementia

The rare dementia support website also provides useful information about types of dementia https://www.raredementiasupport.org

The Alzheimer’s Society Dementia Talking Point forum for cancer and dementia is designed specifically for carers of people with cancer and dementia to gain peer and Azheimer’s Society support https://forum.alzheimers.org.uk/forums/caring-for-a-person-with-dementia-and-cancer.81/

 

Further Web-based links with suggestions for adaptations of care are included in the toolbox document attached at the bottom of this webpage.

 

References:

 

 

1.         National Institute for Health and Care Excellence Dementia: assessment, management and support for people living with dementia and their carers (NG97). 2018.

2.         National Institute for Health and Care Excellence Dementia Quality Standard (QS184). NICE Guidance, 2019.

3.         Alzheimer's Research UK. Dementia Statistics Hub. 2020; Available from: https://www.dementiastatistics.org/statistics-about-dementia/.

4.         The National Institute for Health and Care Excellence, Dementia, disability and frailty in later life - midlife approaches to delay or prevent onset. NICE Guideline (NG16). 2015, The    National Institute for Health and Care Excellence.: London.

5.         Innovations in Dementia. Dementia diaries. 2019  [cited April 2019; Available from: https://dementiadiaries.org.

6.         Innovations in Dementia. Dementia words matter: Guidelines on language about dementia. [ December 2019].

7.         Crutch, S., et al., Posterior cortical atrophy. The Lancet Neurology, 2012. 11(2): p. 170-178.

 

 

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