'Making the Road Less Rocky for Carers' When the dementia is diagnosed

'Making the Road Less Rocky for Carers' When the dementia is diagnosed

Receiving a diagnosis of dementia can be a difficult and emotional time, and can come as a shock for both the person with dementia and their carer. Where possible the carer’s views and needs should be taken into consideration.

Carers and staff have so much to learn from one another- they need to work together to get the best for the person who has dementia

Carer engagement – listening to carers needs

Professionals, particularly GPs, can really benefit from listening to and taking account of carers concerns. Carers are experts by experience when it comes to the person they care for, therefore valuable information about the person with dementia can be obtained through consulting them, it is also imperative to listen to any concerns they have about their own health.

If carers are offered information about the type of dementia, and its possible progress at this early stage, it can help them plan for the future, help them understand the person they care for and plan for theirs and the person with dementia’s needs. Remember that although the person with dementia may not always want to know what the future holds, it is very important for the carer to be able to plan. 

Resources to support you:

Timely diagnosis is vital

Receiving a diagnosis in good time is vital, even though it can be traumatic. It can open doors to much needed services and extra finances. Timely diagnosis can also give the person with dementia and their carer more time to plan for the future. For the carer it also gives an explanation to the behavior changes they have noticed in their family member of friend.

Access to specialist multi-disciplinary teams

NHS services often take for granted that patients and carers understand their systems and procedures, however giving clear information on referral routes and what those services do is important for carers and patients. Carers report they have often come away from an initial appointment in shock and unaware of how to get back in touch, or where to go for further support. Carers value both professional and peer support and at this stage in dementia are particularly interested in help and support with the cognitive difficulties in the person with dementia.

Carers should be offered information or a referral to local carers and dementia services even at this early stage, they will be able to help them come to terms with the diagnosis, understand the present and plant for the future.

Where to find support for carers

Carers Trust Network Partners provide a range of support services for carers across the UK. Find your local service.

Advice and information about dementia-related medication

Carers can benefit from advice and information about dementia-related medication (and, where appropriate, interactions with other medications). Medication is a real concern for carers as they are commonly the one who takes on this responsibility. It is important where possible to include carers in the conversation about choices of medication, likely success and any side effects. Carers can then have further discussions with the person they care for and be on the lookout for any adverse reactions.

Carers can be directed to local pharmacies, pharmacy helplines, and helpful websites for more information.

Where to find support for carers