INFRAESTRUCTURA DE LAS TIC PARA LOS SISTEMAS DE SALUD

6.2.6

6.2.6

6.2.6

The InternetThe InternetThe InternetThe Internet

Family carers of PwD frequently use the internet to research information about dementia and it is seen as an essential source of information for PwD and informal care givers. For the majority of people it is quickly accessible and offers a very broad range of advice (Kort S.M. and van Hoof, 2014). Kort S.M. & van Hoof, (2014) used a participatory design process to create a website resource regarding home modification in the Netherlands. The process included using focus groups made up of from dyads of a PwD and their carer. In the twelve months following the launch of the website it was viewed more than 13,000 times but 37% of these did not explore beyond the first page and less than 20% visited the site a second time. Therefore it was concluded that the end usability of the site for this population needed further investigation (Kort S.M. & van Hoof 2014). However the participant numbers were small, being only three couples involved and the information provided was specific to the Dutch Social Support Act, therefore may not be generalizable to other populations. There is also a wide discrepancy in the amount and quality of the advice offered regarding dementia. Websites which appear at the top of the most common searches are not those who give the most evidence based or broadest information (Anderson et al. 2009). The ability to evaluate the quality of online resources has been tested

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through research, the Dementia Caregiving Evaluation Tool (DCET) was proposed by Bath and Bouchier (2003), as a way of carers evaluating the sources of information they use. The resulting tool includes 47 questions and tick box answers regarding the information offered. The DCET does not allow for specialist dementia websites which may concentrate on specific areas such as environmental design and instead deals with generic care information. The length of the tool and its emphasis on the breadth rather than quality of information mean that its practical application remains limited (Anderson, Nikzad-Terhune and Gaugler, 2009).

Searching for information from online sources is a complex task which requires good levels of cognition especially for older people who lack long term experience in using the internet (Sharit et al., 2008). Specifically memory and recall were found to be critical skills in the planning of an internet search strategy among older people.

6.2.6.1

6.2.6.1

6.2.6.1

6.2.6.1

The influence of age on internet useThe influence of age on internet use The influence of age on internet useThe influence of age on internet use

Only 59% of households in the UK which contain at least one adult over 65 have access to the internet (Office for National Statistics, 2015). However use of the internet amongst people over 65 is growing. The same statistics also show that 71% of adults over 65 had used the internet in the preceding three months. In 2014, Fischer et al. discussed the differences in Health Information Technology use between younger seniors (60-80 years) and older seniors (over 80 years). They found that significant differences were present between these two age categories in relation to their feelings about accessing the internet. They hypothesised that this occurs because younger seniors have retired from work more recently and therefore were more likely to have experience of the internet within their working life (Fischer et al., 2014). Searching for information from online sources is a complex task which requires good levels of cognition.

Whilst there is a lack of studies examining the information delivery preferences for people with dementia, there is a body of research evidence exploring where people with MS, find information. MS like dementia, is a long term progressive condition. Bishop et al. (2009) questioned people on the National Multiple Sclerosis Society

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mailing list in the United States (n=409). Participants selected one place that they most often seek information from a list of five options. Doctor or neurologist was the most preferred source (31.69%) followed by the internet (27.94%). They found that use of the internet was inversely proportional to age. In fact, age was a consistently significant factor in predicting information source use. They also found that there were significant correlations between personal profile and use of different information sources. For example they found that people more likely to use the internet were those who were married, younger, female and employed full-time but this research does not offer any indication of what the causal relationship might be. The research was further limited (as acknowledged by the authors) by only allowing one choice of information source, which is unlikely to give an accurate picture of the actual situation.

Info

InfoInfo

Information source preference and dementiarmation source preference and dementiarmation source preference and dementiarmation source preference and dementia

Recent research by Killen et al. (2016) investigated the information source preferences of people following a diagnosis of dementia with Lewy bodies. They conducted an online survey from a Lewy body charity website. The research found that the preferred method of receiving information was at a support group specifically designed for PwD involving Lewy bodies. However respondents were limited in their choice of answer to small groups with patients separate, joint small groups or individually (Killen et al., 2016). Therefore media, internet and published information sources were excluded. Additionally conducting the survey exclusively online is likely to have biased the results.

A study by Suhonen et al. (2015) surveyed significant others (n=264) of people with memory disorders (including dementia) who were living in formal homecare or newly admitted to residential care in Finland. They found that participants lacked knowledge about care and services specific to their significant other. They concluded that there was an inability of health professionals to tailor the information to the individual which then impacted on both how useful and how understandable it was. They concluded that information could be improved by collaborative working between professionals

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and health sectors. They also indicated a need to explore the preferred methods of receiving information by PwD and their significant others.