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Adults :: Dementia :: User Views

In March 2012 a report was produced for Medway LINK by Lake Market Research. The executive summary of this report identifying the four key themes coming out of this report is inserted below. The report attempted to ascertain views of carers, providers and people with dementia but struggled to access views from people with dementia. 14 Medway carers were interviewed as part of this work and 10 providers of care. The findings from the report remain relevant and are being tackled by the development of the Dementia Strategy.

There are some strong themes emerging from this piece of research which were echoed by both carers and providers:

  1. A lack of continuity throughout the dementia journey from diagnosis to end of life
  2. Services fragmented - too many different services not working together
  3. Greater professional understanding and awareness with more personalised care / attention to those with dementia
  4. More public awareness about dementia and reducing the stigma associated with the disease.

1. A lack of continuity throughout the dementia journey from diagnosis to end of life

The general consensus here, amongst carers and providers, is that the services on offer are not consistent and do not adapt as the condition worsens. Post diagnosis people generally felt that the services were adequate and it was possible to cope, however this was more to do with the condition being relatively early in its stages and therefore much easier psychologically and physically to access the services on offer. Furthermore with the sufferer being more aware this meant the effectiveness of the service was higher and there was less demand on the carer. As the condition worsened, the general feeling was that it became more difficult to access the types of services which would have made a difference. Furthermore, in the later stages people felt there was limited emergency help and advice twenty four/ seven and that practical help is sometimes needed at all times, to quote “dementia is not 9.00am to 5.00pm”.

An extension to this theme addressed early onset dementia. Those with this condition often fell into “no man's land” because they were not considered elderly enough to access some of the dementia services on offer to them, or the services on offer were not appropriate due to the age of the person.

“There appears to be a need to address the gap in service provision from early stages to later stages when the condition is more demanding as well as age considerations in terms of younger people getting dementia and offering services more appropriate for their age”.

2. Fragmented - too many different services not working together

Both carers and providers felt that there were lots of services out there but that none of them were joined up. This results in confusion because people are either passed from pillar to post or they don?t know where to start asking for help. The variety of services available is not the issue; it is the lack of communication between them which makes the process patchy. It does not necessarily matter where the person enters the system, as long as that person knows to pass them onto the most appropriate service. Alternatively, people felt there should be a central office / contact that can then refer them onto the most appropriate service or individual.

Ambivalence can be seen in some of the scoring of the provision of dementia services locally, with scores hovering around the midpoint and tipping slightly towards dissatisfaction. This seems to be more associated with the process one has to go through to get into the system, rather than the quality of the service itself once you are there.

“More co-ordinated provision of services is needed - a central office or greater communication between services to guide carers / people with dementia through the system to the most appropriate service”.

3. Greater professional understanding and awareness with more personalised care / attention to those with dementia

Overall, people felt more training was needed amongst professional staff across the board, this included hospital staff, doctors and care staff. As an example, a person may require medical attention that is separate to their dementia illness and often carers felt the staff did not recognise or understand that a dementia patient will act differently to patients who do not have dementia on the ward. In addition to this, people felt dementia care cannot be generalised; it needs to be specific to the person who has dementia.

“More recognition of dementia within the professional environment and greater understanding of behavioural changes. Provision of services which offer more personalised activities tailored to individuals rather than generalised day centres to cater for all. Clearly this needs to be balanced with the feasibility of bespoke servicing but a greater understanding of the disease could highlight the benefits of providing more stimulating social activities and improving the quality of life for both carer and patient”.

4. More public awareness about dementia and reducing the stigma associated with the illness

There still appears to be a stigma associated with dementia which influences the effectiveness of the services on offer because people are not yet willing to admit they need help or their loved one needs help. Coupled with this, there is limited knowledge of the condition which makes it a daunting prospect to tackle and often problems are kept hidden as a result.

There is also a sense of determination to just “get on and cope with it”; that it is “part and parcel” of one's commitment to their loved one to care for them. Whilst this is commendable, it seems people cope until it reaches crisis point and then it starts to break down. Acceptance of help earlier on could go some way to preventing it reaching this stage which would require a change in people's perception of dementia and recognition that these services are there to enhance the quality of life for both them and their loved one.