I have the right to a diagnosis
The Charter of Rights for People with Dementia and their Carers in Scotland states… ( >1)
When this right is respected
People with dementia have the right to the highest attainable standards of physical and mental health.
People with dementia and their carers will
Receive a timely and accurate diagnosis and be provided with the information they need about their condition, treatments and support.
Receive the information and support they need to stay well and live with the challenges of dementia.
Be involved in decisions that are important to them now and in the future.
People with dementia will...
Receive an accurate and timely diagnosis
Wherever a person is living and whatever the stage of their illness, the individual has the right to a diagnosis….
NHSBoards will ensure that
People worried about their memory have timely access to services for assessment, including those who may be seldom heard, e.g. homeless people, black and ethnic minority communities, people in remote areas, people with sensory impairment. ( >15)
GP surgeries and hospitals have established pathways to diagnosis in place. This should include: referral to a service that specialises in the diagnosis of dementia when appropriate, identification of who is best placed to carry out specific roles in relation to diagnosis and pre and post diagnostic support. ( >16)
At time of diagnosis
NHS Boards will ensure that
GPs and hospitals can refer people with suspected dementia to services that specialise in the diagnosis of dementia. Services will have initial contact with the person within four weeks.
Services that specialise in the diagnosis of dementia can refer on to a neurologist, neuropsychiatrist or neuropsychologist if the diagnosis is complex.
Before confirming a diagnosis of dementia, the practitioner will consider and record the effect the diagnosis may have on the person and their family and the degree of pre and post diagnosis psychological intervention that is likely to be required.
Careful consideration needs to be given to the most appropriate location for informing the diagnosis; for instance, whether in an out-patient clinic or at a person's own home. The length of the appointment needs to be sufficient to afford the person with dementia and their family time to consider what they want to know next.
Whether it is the GP, hospital doctor or a specialist service that considers the diagnosis, the assessment by skilled, confident and well trained staff using recognised diagnostic tools. ( >17 and >14)
There are clear referral processes for post diagnosis treatment and support for people recently diagnosed with dementia and contact details given of a service they can contact for further information and advice.
People diagnosed with dementia are included on the dementia register. ( >15)
Receive information about the illness and the supports and services available
Everyone who receives a diagnosis of dementia is entitled to information about their illness and the local supports available to them, their family and people important to them.
NHS Boards and local authorities will ensure that
The amount and type of information that is given will follow an assessment of the individual's needs and the needs of their family, including providing communication and language support if there are language, cultural or knowledge barriers.
If the person with dementia does not want to receive this information they should be offered the opportunity again at a future date.
Information provided is available in a variety of formats and aimed at maximising wellbeing and quality of life. It will include:
- Information about the condition, advice on managing symptoms and treatment available.
- Contact details for the Dementia Helpline and independent advocacy.
- Information on support available locally; this should cover information about local support services including post diagnostic support and counselling, either one-to-one or in groups.
- Specific information about continuing to drive following a diagnosis of dementia.
Have the opportunity to make plans for the future
The earlier a diagnosis is made, the more likely it is that the person with dementia will be able to make plans for their future and have their choices respected.
NHS Boards will ensure that
At the time of diagnosis or shortly afterwards, the person with dementia and their family will be offered the opportunity to discuss the options that are available to them, most specifically with regard to health, welfare and money including benefits. This will include discussion of options such as appointing a welfare and/or financial power of attorney and making advance decisions about medical treatment. This will later be supplemented with clear written information, which will be provided at a time suitable to the person with dementia and their family. If the person with dementia declines to discuss these matters it needs to be offered to them again at a future date. ( >2a)
Mr Smith's Diagnosis
Mr Smith had noticed for a few months that he was forgetting things more than usual.
His GP carried out a full physical, cognitive and mental health assessment, but on this occasion was not sure of the diagnosis so referred Mr Smith to the local specialist memory assessment service.
Mr Smith attended the clinic with his wife where he met with a Consultant Psychiatrist, underwent further mental testing and was given a diagnosis of Alzheimer's type dementia.
Before they left they were given written information about his diagnosis, what had been discussed about the proposed drug treatment and an appointment to return in a week's time to meet with a named member of the team to discuss the diagnosis further.
The next week they met with a nurse attached to the team to discuss the diagnosis and the post diagnostic support for Mr Smith and his wife that was available locally. Mr Smith was given a return appointment at the clinic for ongoing review of his medication and the nurse gave them contact details for a local support group for people with dementia.
Initially neither Mr Smith nor his wife wanted to think about making plans for the future as they did not feel ready to take this step. After meeting people at the support group they changed their minds and contacted the nurse from the memory assessment service who arranged to meet with them. At this meeting, the nurse explained the option of appointing Mrs Smith as her husband's welfare and financial power of attorney to them so that, if he did become unable to understand or make some decisions in the future, then he could rely on his wife to make those decisions on his behalf as she knew him better than anyone else.
This lead onto discussions about other issues such as treatments for physical illness and also writing down the things that were really important to him. Not just the "big issues" such as medical care but the key information that he wanted people to know about him.
Following this discussion Mr and Mrs Smith spoke with their solicitor and made the necessary arrangements.
Two years later Mr Smith remains much as he was before his diagnosis. He receives regular reviews of his medication and continues to lead an active and busy life. He still drives his car, volunteers for his local church and goes on holiday. Neither he nor his wife have felt so far that they need any formal support from the local health or social services but have continued to attend the support group and know who to contact if the situation changes.
Mr Young's Diagnosis
Mr Young was admitted to a care home about three years ago. Until then, he had been living at home with his wife.
Following his admission he began to have some problems with his memory and staff noticed a change in his behaviour. He was withdrawing from contact with other people and becoming increasingly bad tempered.
His wife was very upset about his behaviour; he could be very abusive towards her, which led her to visit less often. Staff in the care home started to accept this behaviour as "the way he was". He would often shout at them and lash out when they were attending to him.
He was physically very well so did not have any medical contact apart from his annual flu injection.
The nurse giving the flu injection asked the staff when Mr Young had been diagnosed with dementia. The staff said they were not sure about that so the nurse did some investigation and found that he had not been diagnosed with dementia; in fact, he had not come to the GP's attention at all.
The GP visited and, following an examination, diagnosed Mr Young as having dementia. The GP referred Mr Young to the local community mental health team for advice on how to manage some of his behaviours. Mr Young was placed on the dementia register at the GP practice to ensure a review, at a minimum. annually.
Following assessment, the mental health nurse put in place a care plan to help staff who work with Mr Young, to understand why some of the behaviours were occurring and how to prevent them. The nurse was able to explain to Mrs Young the effect the dementia was having on his behaviour and she also referred Mrs Young to a local support group for carers, where she was able to talk to people who understood how she felt.