Recording Preferences and Needs After A Dementia Diagnosis.

A frequent  task in my role as a mental health practitioner in  an older adult mental health team has been preparing a report before a person with dementia moves into a residential care setting.  It includes a brief social and medical history and summarises their preferences and  needs.    It has occurred to me  that a document of this kind could be useful for a person with dementia  from the earliest stages after diagnosis even when they retain a high degree of independence.

A good example of when this might be helpful is in the fast paced environment of a general hospital.  Perhaps the person might have to be admitted there in an emergency.  Or maybe a seemingly routine appointment for  a physical health condition in an outpatient clinic is scheduled.      Busy pressurised staff  who have an overriding need to be task focused might not have the time to gather comprehensive information outside their own specialism.    Nor might they have a sufficient understanding of  how differently dementia affects people individually.    Having a relevant up to date record that is readily available  has significant  potential for  informing care and reducing misunderstanding, distress and actions that might compromise the person’s values and beliefs.   This might be particularly pertinent if a person’s dementia is of a type where symptoms do not conform to common stereotypes.

I would suggest that the information gathering is treated as a dynamic process and not a one off exercise.    For it is almost a given that a  person with dementia’s needs will change over the time.   Not only is the dementia itself likely to progress but the person might also experience changes to their physical health or their social or physical environment which might impact on their care.   An electronically stored rather than handwritten format will make updating the document easier and also allow it to be shared in a timely manner.   It also means that the document might be edited so that only relevant information is shared in a particular scenario.   For relevant facts need to be presented in a clear and succinct way.   Too much superfluous data and there is a risk that important information is lost.

Whilst the content of this document might be highly individualised it is important to include basic up to date details, for example, preferred contacts, current medication and the frequency that it needs to be taken. past medical history and details of allergies and adverse reactions.  It is my experience that this information is not always accurately shared between different health and social care providers.    A brief social history might also be helpful particularly if a person’s experiences in the past might impact on their current care.    Here are some other suggestions of what it might be relevant to include.

  • Do they have values or beliefs that need to be considered when caring for them, for example do they follow specific spiritual practices or dietary preferences? 
  • What assistance do they need with activities of daily living such as feeding, washing, dressing or toileting?  Do they have a preference for the sex of a caregiver?
  • Are there particular things that they find pleasurable or upsetting? What might be helpful to alleviate distress?  
  • What are their needs from a mobility perspective?  
  • Do they have sensory preferences or impairments and what needs to be done to address these?
  • How does their dementia specifically affect them?  What about the impact of other physical and mental health conditions?
  • Have they received treatment in the past that has been helpful or harmful?
  • What are their communication needs?  Can they express themselves or do they need assistance to do so?
  • Do they have any advanced wishes about their treatment or care and has this been recorded elsewhere?

This list is by no means comprehensive but should provide a starting point for this exercise.  Seek input from professionals and those personally close to the person to gain an insight into what might be important for them.

Leave a Comment