1 | Information provision and support at dementia diagnosis

More documents

Recommendations

Info

The standards set out in the NICE guidelines state that all people who attend for a diagnosis of dementia should be given information about their condition (e.g. type of dementia, symptoms and how the illness might develop), treatments, support options locally, a personalised care plan and a carer’s assessment (for carers). We are aware that this has not been the experience of those who have had a recent experience of dementia diagnosis. Our data show that negative experiences can be attributed to a perceived lack of sensitivity shown by some staff, on occasions, who are involved in the diagnosis process. In addition, the amount of information and support given to people with dementia and/or their carers at diagnosis is not always to be perceived as the right amount or presented in a format that suits the needs of the individual. People with dementia and/or their carers attending the Memory Assessment Service must be given both written and verbal information as per the NICE guidelines. The NICE guidelines state that people experiencing dementia diagnosis must be given both written and verbal information about their condition, treatment options, a personalised care plan, and a carer’s assessment (for carers attending). Our data show that the services that deliver dementia diagnoses are not fulfilling these criteria on a regular basis. : Ensure that all individuals attending services that deliver dementia diagnoses are contacted by telephone following their visit. Our data show that being given a dementia diagnosis can cause feelings of shock, sadness, frustration and anger. This may affect people’s ability to digest and comprehend the next steps. In implementing a telephone follow-up, individuals will have a chance to speak with someone about concerns that they have and will be given an opportunity ask questions that they may not have had the chance to ask at the diagnosis. We have been told that support following the diagnosis is non-existent in some cases and this step would address that and make individuals feel better supported, particularly carers. 8 | Information provision and support at dementia diagnosis
The Nottinghamshire Dementia Joint Strategic Needs Assessment states that “dementia is overwhelming for carers and they need adequate support” (Nottinghamshire Dementia JSNA, 2014). Therefore ongoing support is key in ensuring that both people with dementia and their carers are able to live well with the condition. Our data indicated that attending support and activity groups can provide an opportunity for carers to feel supported and for activity groups to help the cognitive issues that people with dementia may face. We were told that information programmes for carers, carer support groups and peer support groups can be beneficial. Unfortunately our data show that these may not have the capacity for additional attendees and that these groups may not operate as regularly as needed. : Increase the number of support groups and the capacity of existing support groups to accommodate more users. Our data show that support groups, whether statutory or voluntary, have benefits for people with dementia and their carers, and given the increasing diagnosis rates, demand will increase every year. Because there isn’t the possibility to increase capacity in existing groups, we suggest that the frequency of these groups, and the number of these groups should be increased. In doing this, more people with dementia and/or their carers will be supported now and in the future. 9 | Information provision and support at dementia diagnosis
Page 1 and 2: 1 | Information provision and suppo
Page 3 and 4: We wanted to understand people’s
Page 5 and 6: The consultant was very abrupt in h
Page 7: Current guidance stipulates that th
Page 11 and 12: There are venues that provide a Mem
Page 13 and 14: When was the diagnosis made? suppor
Page 15 and 16: Table 1. Star ratings for making an
Page 17 and 18: Figure 8 shows that: 29% (15 people
Page 19 and 20: No one has ever sat with me (like H
Page 21 and 22: hospitalised that the family receiv
Page 23 and 24: We asked everyone that we spoke to
Page 25 and 26: Six experiences described the overa
Page 27 and 28: My husband used to have follow up a
Page 29 and 30: Healthwatch Nottingham and Healthwa
Page 31 and 32: We collected 60 completed surveys f
Page 33 and 34: Figure 5. Experiences of the inform
Page 35 and 36: Figure 3. Overall experience by ser
Page 37 and 38: 37 | Information provision and supp
Page 39 and 40: 39 | Information provision and supp

1 | Information provision and support at dementia diagnosis

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?