Informing the Person
The subject of telling a patient that they have Dementia is not an easy one to approach. There are many factors which will need careful consideration before you make the decisions on when, where and how to tell the person that they have been diagnosed with Dementia. Rather than being a definitive guide, this information has been put together to highlight some of the issues that will influence the process of informing a person that they have Dementia. There will certainly be additional factors to take in account for each individual case.
Disclosure
There has been some debate on whether it is advisable to tell a patient that they have Dementia but it is generally accepted that information will only be withheld if the patient has expressed a specific wish that they do not want to know the outcome, or the patient is mentally or emotionally unfit to cope with the news and it would have detrimental effects on their wellbeing.
In the early stages of Dementia, when the person is still in a position that they can fully understand the implications of their diagnosis, it will have some major benefits. Obviously this will mean that the patient has ample time to be pro-active in the planning of their future needs and be involved in all the necessary social and legal arrangements to ensure that they receive the best possible care when their Dementia progresses into the mid to late stages and begins to affect mental and physical abilities.
There is a risk that this may also have some detrimental effects on the patient. A positive diagnosis of Dementia could lead to the patient experiencing feelings of depression, hopelessness or even suicide. Careful management of the situation, and consideration for the person's particular circumstances is extremely important to try and avoid these detrimental emotions. Often, a positive diagnosis of Dementia will be a relief to the patient as they will then have confirmation as to why they are experiencing the problems that brought them to seek a diagnosis in the first place.
Family, Friends and Carers
The decision to involve a third party when giving the diagnosis to a patient will be dependent on a number of factors. Obviously, if the patient is competent in their decision making and has expressed a wish not be told of the diagnosis, then it would be unethical to go against this wish and pass the information onto someone else. Similarly, if the patient is judged to be unable to make an informed decision, then it would be prudent to inform a family member or carer of the diagnosis so the necessary arrangements for treatment and care can be arranged. In some circumstances, the patient may not want their family to know of their diagnosis, and if they are deemed to be capable of making that decision, then their wishes should be respected.
Setting the Scene
There is no easy way to inform someone that their diagnosis of Dementia has been confirmed. You can, however, make certain allowances or arrangements so that the person receiving the news, (and the person accompanying them, if present), experiences minimal discomfort or stress. Obviously the level of information and the way in which it is given will have a bearing on how the news is received, but the diagnosis should always be presented with consideration to the patient's currently level of emotional and mental ability. A few key points that should be considered are listed below.
- Use a comfortable and relaxed environment.
- Speak slowly and clearly.
- Give the information in small, easy to understand phrases.
- Avoid complex or academic terminology.
- Allow time for the information to be fully understood.
- Allow time to answer questions.
- Offer further information on support.
What Information You Should Give
Obviously the information given, and the manner in which it is presented, should be tailored appropriately to ensure a receptive audience. As a general guide, the following topics should be included.
- Explain why the person is having particular symptoms.
- Give information on the type of Dementia diagnosed.
- Give a comprehensive explanation of the long term expected prognosis.
- Give a summary of the cognitive and non-cognitive symptoms that are likely to occur.
- Give a list of medicinal and therapeutic treatments that will be prescribed or recommended.
- Give information on local and national support services that are available to people with Dementia.
Obviously this information is not exhaustive, and special consideration should always be given to the patient's mental and emotional abilities, current circumstances, and the availability of support when planning to tell them of their diagnosis.
