What to expect following diagnosis: Dementia care plan

What to Expect following diagnosis

Once the doctor has been through the diagnosis, the important thing is to focus on next steps. This will often be formulated through a dementia Care Plan. 

The Care Plan

The Care Plan should identify what care the person with dementia will need as well as highlighting what the carer will need. It should set out how the person with dementia will get the care and treatment. It may well be that the doctor is the person who will help build this care plan, or it may be another local service, such as the local council. 

Your Care plan should also detail who will be responsible for the person in the future, who will take on responsibility for treatment, legal and financial issues for example, especially in the latter stages of the illness when the person may have become incapacitated. ‘Lasting Power of Attorney’ is often how it is referred to. We have more details about this detailed in our blog here.

The care plan should also cover off what type of care you would like, and where you would like to spend the last part of your life, whether that be in a care home or at home etc. 

It’s vitally important to remember that the person with dementia and/or their carer can have a say and an input into the care plan and what it will entail.

Assessment

An assessment can also be done to identify whether the person who is going to be the Carer will need any support. The assessment will clarify whether the carer will need rest/respite from care duties, and also whether any financial support can be given in the form of a ‘Carer’s Allowance’.  We talk about financial support for dementia patients here and for their carers in more detail here. 

An assessment can be arranged, where an assessor will look at what help the person may need with washing/changing etc etc. If you are a carer, then it is likely you will be identified as the support, but the assessment is important to see if any financial support can be given. If a carer is not freely available, then it may be that the family of the person with dementia may have to pay towards the cost of the support. The council will often arrange the assessment, but it can also be done through your GP and/or your care coordinator.

Care Coordinator

The other thing you should expect to get is a Care Coordinator. This will be the main ‘Go to’ person when it comes to the care and support that the person needs, and it’s important that appointments are arranged with this person to review condition and progress. This person is responsible for monitoring the health of the patient, making sure they know about the health they can get and work with family & friends to make sure they are getting the help and support that they need. Help with day to day activities is also something that should be offered. 

The Care Coordinator should make sure that the dementia patient is covered with regards to ongoing medical treatment, whether this be physical and/or emotional. Whilst there is no cure for dementia as yet, certain treatments are available that the person could receive and certain activities which may delay the development of the disease. 

There may be other treatments or medications not linked to dementia that the patient will require. It’s important, and you should expect the care coordinator to make sure that all treatments for the patient are arranged and link together. We cover dementia treatments in more detail here and medications for dementia here.

Local organisations and charities

Another thing to expect to be given is detail around local organisations/charities that will be able to offer support. Some of these groups may be help to help with technical requirements such as legal matters, whilst others may help with regards to socialising and activities. It’s important that the person and carer’s are aware of every avenue of help and assistance they can get. 

Clinical trials and research

Finally, it may be that research is being carried out about Dementia, and the patient should be made aware of these research activities so they can involve themselves, put themselves forward for participation, such as any research and any possible medical trials. This will depend on age and general health.