We already wrote in the past of the importance of leisure activities for people living with dementia, and their carers. Physical activity is often reported as being highly beneficial, but for a person living with dementia, intellectual activities and social activities are just as important.
Leisure activities is something we all engage in, these can vary between playing tennis with friends, going to the theatre, hanging out with family and relatives, or going on a holiday and visiting new places. Studies show that there is an increase in leisure time for those over 45 years of age. As a consequence, dementia can evidently have a greater effect on accessibility to leisure activities, since greater access to leisure and higher risk for dementia happen both after a certain age.
This is not to say that people with dementia have no opportunities for engaging in leisure activities, which are on the opposite quite supported and advised. What holds true, however, is the fact that several barriers exist for those wishing to engage in those activities while living with dementia.
But what are we referring to, when talking about barriers to accessibility? Some researchers identify 3 types of barriers to leisure when dealing with dementia:
- Intrapersonal barriers: those associated with one’s psychological state which are felt to inhibit leisure;
- Interpersonal: those associated with one’s social setting such as family;
- Structural constraints: barriers which are outside of the control of the individual.
A 2016 study wanted to find out more about the perceived barriers to leisure for people living with dementia. They did so by conducting a series of focus groups, composed by people living with dementia and their carers, as well as people showing signs of cognitive decline, but not enough to fill the criteria for dementia.
One current theme that emerged during the focus groups was accessibility. More specifically participants spoke about:
- Accessibility of transport: many participants lamented their dependency of both motorised and non-motorised mode of transport to engage in leisure activities. Typically, a person living with dementia will probably not be able to drive a car, but that same person may not have access to public transport either. Even if those people should have access to public transport, carers may be worried about the length of those trips or the overall travel experience. However, when access to public transport was found several over 60s participants referred to it as a “lifesaver”.
- Accessibility to toilets: this was often reported as a significant accessibility problem. The research was conducted in the UK, and the authors write about how the public toilet provision in the UK has become a matter of public concern. Participants in the focus groups reported problems with confusing signage, the need for unisex toilets, the location of public toilets and a lack of public toilets on trains.
- Accessibility of venues: many participants in the focus groups lamented problems with accessibility when trying to access attractions, holidays and holiday accommodations, especially when the person living with dementia had also other types of physical disabilities, requiring for example a wheelchair.
- Fear of getting lost: many caregivers reported being afraid of losing the person living with dementia they care about, and preferred not bringing the person on holiday or other leisure activities as a consequence. In some cases, those concerns actually became a reality, although some also admitted that the person living with dementia was eventually able to find the way back home.
A second theme that emerged often was the concern and perception of caregivers of the person with dementia to engage with activities. Many believed the person with dementia not to be able to enjoy leisure activities or getting bored by them.
But participants didn’t only report on barriers, but also on a number of sites were the visitor experience was dementia-friendly, such as certain cafés, toilets and parking. Especially appreciated, were visitor attractions that allowed for a mix of meal with another type of activity, so that a day-out would consist in a social activity as well as an opportunity to rest and eat, for example going shopping and then eating lunch at a restaurant. Other locations that were particularly appreciated were open air locations such as natural parks or gardens, or places with animals.
It is important to understand the challenges of people living with dementia and their carers, in order to provide them with opportunities to engage in leisure activities and live independently and with dignity. With the number of people living with dementia set to grow exponentially in the next 30 years, making deep changes in the tourist and service industry to accommodate the needs of people living with dementia will definitely be something those areas will have to face.
Innes, A., Page, S. J., & Cutler, C., (2016) Barriers to leisure participation for people with dementia and their carers: An exploratory analysis of carer and people with dementia’s experience, in “Dementia”, 15(6), pp. 1643-1665.