Statement 4: People with dementia are enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice

Key messages

What does this mean for care providers ?

Participating in activities gives everyone a sense of purpose, and is crucial for our health and wellbeing. People living with dementia are no exception to this, and care providers have an important role to play in identifying opportunities and supporting individuals to become involved. Life histories are vital as a source of information here, but it is important to recognise that interests and preferences can change. Listening for ideas of interests in conversation and watching reactions can be useful in checking preferences for particular activities.

For people being supported at home, care providers should think about how activities can be encouraged both during their visits and afterwards. Providing cues such as an open newspaper or photo album may prompt conversation during the visit and be something to look at later. Having a good knowledge of opportunities in the local community will also be helpful as would being able to link a person with a volunteer to accompany them out. And family members may welcome suggestions as to activities to try together.

For people living in care homes, the opportunities for activity are extensive and reach beyond those traditionally offered. Enabling residents to participate in household tasks can foster a sense of worth; the environment can be used to encourage activities; volunteers may be able to share their interests with residents and support them to join in; and younger family members may be willing to share their IT skills and offer access to all that the internet provides.

It is however important to recognise that dementia (and depression, often also present) may affect a person’s motivation and ability to initiate activity, and can also result in a loss of confidence. Care providers need to think carefully about how to invite an individual to join in – consider who is best placed to provide that encouragement and what might make it easier for the person.

Why is this important to carers ?

Supporting a person who has dementia to remain active and still feel involved in life can be the key to maintaining quality of life, even into the later stages of the illness. Carers should also be supported to be able to continue with activities they enjoy – and these may not always involve the person with dementia.

Where might I find leisure activities that might be of interest to my relative with dementia?

Each local area offers its own assortment of leisure activities, provided by a wide range of organisations – so there are many different possibilities. Start with the local authority, but also look into local voluntary organisations (such as Age UK) to find out about local leisure options. An increasing number of community activities are striving to become more dementia-friendly, so don’t rule out going to non-dementia-specific services: test the waters and encourage the person to give a general group a go.

It’s worth thinking about whether just simply encouraging the person with dementia to maintain or return to their ordinary lifelong interests – say going to music concerts or playing cards – could work. While the person is still active, physical activities such as visiting gardens, walking in the park and swimming may be good options. Creative arts can be very stimulating and suitable for people with dementia too: so find out about local arts groups, choirs or musical events, or dancing groups, for example. More and more arts venues are offering activities specifically aimed at people with dementia and carers.

It may be that a dementia-specific setting or group feels a more suitable option. Start by contacting Dementia Web, the Guideposts Trust’s information service for people with dementia – which produces lists of key services for people with dementia in any locality (if they don’t already have one, they will develop one for the area in question). The helpline is 0845 1204048.

Some areas have dementia cafes or memory cafes (look at the Memory and Alzheimer’s Cafes UK Directory to find out if there is one locally). Again, they operate out of a range of organisations (such as memory clinics and community centres), and they vary in what they offer. Some are linked in with local dementia professionals who are in attendance to offer advice and support as necessary. All offer social support for people with dementia and their carers. Some may organise activities such as singing or games.

The Alzheimer’s Society runs a range of local services in many places: including social groups for people with dementia and carers, ‘Singing for the Brain’ groups (structured singing groups), and more formal ‘day care’ usually arranged following a local authority community care assessment.

What should I consider when looking for activities for a person with dementia?

Some people with dementia may want and be able to continue with their hobbies and leisure activities for some time; others may develop new interests, particularly as their physical health changes.

Consider whether the activity will be aimed at the person with dementia or carers as well, and whether this will suit. Some groups offer separate sessions for people with dementia and carers – perhaps followed by a joint session. Some carers need or prefer to be close by – others use these groups as a vital chance to have some time to themselves.

If the person with dementia receives a personal budget, you could consider using it to fund a leisure interest because the benefits may be greater than alternative uses for the money.

Be sensitive to how challenging the activity is for the person with dementia. If they find it difficult to cope, the exercise could be counterproductive, leaving the person feeling depressed and less willing to try other options in the future.

At the start of being involved with a new group, help the person with dementia to be able to share information about their preferences, likes and dislikes – this could be a valuable first step for getting started on the right note. The information can be brought together as part of a life story book or a ‘This is me’ leaflet (developed by the Alzheimer’s Society).

If the person is younger, there may well be other issues to consider: they may be more physically active and need to link up with other similarly active people, and they may well feel uncomfortable in social and leisure situations with people who are 20 to 30 years older than them.

Can a person with dementia drive?

A person in the early stages of dementia may be keen to maintain their own leisure activities independently. This could mean that they want to drive on their own. As the dementia progresses, the person will reach a point where they can no longer drive safely and must stop. Many people find this hard to accept. When a person is diagnosed with dementia, they must legally inform the DVLA about their diagnosis. For more information check the factsheet on this topic written by the Alzheimer’s Society.

Key resources

Practical tips and information

The ‘Keeping active and occupied’ section on the Dementia Gateway provides a wide range of useful information, from helping everyone to understand why activity is so important and how to embed it through the day, to suggestions as to the sort of activities that work well with people who have advanced dementia.

My Home Life is a collaborative movement established to improve the quality of life for everyone associated with care homes for older people. The case study illustrated through film on the ‘Maintaining Identity’ page gives one example of how important opportunities for activity and involvement are. The website provides many more resources that will be valuable to care homes.

Cognitive stimulation therapy is a brief activity-based treatment for people with mild to moderate dementia that aims to actively stimulate and engage people. It involves a series of group activity sessions, each focusing on a particular theme, such as childhood, food or current affairs. It can be offered by anyone who works with people with dementia, and manuals and training are available.

National Association for Providers of Activity is a charity and membership organisation that offers best practice, training and support to promote high quality activity provision for older people.

Dementia Adventure is a community interest company providing training, research, and consultancy that connects people living with dementia to nature and a sense of adventure.

SCTV

Further information

Activities for dementia

Dementia Choices is part of the NHS Choices website, and it includes a section on ‘Activities for dementia’, which covers topics such as singing groups, multisensory activities and memory cafes and includes links to organisations that are involved in this sort of work. 

Visit the site

Dementia Web

The Guideposts Trust charity's information service, Dementia Web, includes a Dementia Information Prescription service, which provides detailed information about services and support available in 19 local areas - and this list is growing all the time. If an 'Information prescription' does not exist yet for a particular area, staff will create an individualised list with up-to-date information about services in a particular local area on request - begin by calling the Dementia Web national telephone helpline on 0845 1204048.

Visit the site

Keeping active and occupied

SCIE’s Dementia Gateway has resources to help support people with dementia, including written information, films, activities and e-learning This section looks at the importance of activity for people with dementia and argues that ‘activity’ needs to be understood as everything that happens in a day – not just organised outings or events. The section covers ‘Why activity matters’, ‘Activity as part of the whole day’, ‘Creative arts’, ‘Movement and exercise’, ‘Activity resources and approaches’, ‘Involving family and friends’, ‘Activity in the later stages’, ‘Community links’, ‘Culture and religion’ and ‘Reminiscence’. For each topic, important links and further reading are suggested.

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Living well through activity in care homes: the guide for care home owners and managers

This resource from the Council of Occupational Therapists has five different versions – including one specifically aimed at care home owners and managers. The guide sets out a vast range of practical ideas on how to support care home residents to continue day-to-day activities that are important to them, and to promote a whole-team approach to activities. There is also a version of the document for residents, their friends and family that explains the benefits of activity to older people.

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‘Nothing ventured, nothing gained’: risk guidance for people with dementia

This 2010 guidance from the Department of Health reviews the issues and evidence on risk and risk enablement in people with dementia. It goes on to propose a 4-step ‘Risk enablement framework’: understand the person’s needs; understand the impact of risks on the person; enable and manage risk; and risk planning (with an accompanying template for recording an individual’s profile for each step). The guidance includes good practice tips and case examples.

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Living well through activity in care homes: the guide for residents, their family and friends

This 2013 resource from the Council of Occupational Therapists has five different versions – including one specifically aimed at family and friends. The guide sets out a vast range of practical ideas on how to support care home residents to continue day-to-day activities that are important to them, and shows how family and friends can offer support with this approach. It includes many references to the particular needs of people living with dementia.

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Taking part: activities for people with dementia

This contains more than 80 ideas for activities, case studies and practical tips, arranged by theme. It is aimed at professional and family caregivers alike. The book is available to purchase from the Alzheimer’s Society.

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Tools

Local information

The Alzheimer’s Society website contains an interactive map where users can click on their relevant region or enter their postcode to find out about Alzheimer’s Society services in their area – which can then be used as a starting point to finding out about the wider range of dementia-specific groups and services (including support for carers) within a district.

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PAL

Jackie Pool – an occupational therapist specialising in dementia care – first developed the Pool Activity Level Instrument for occupational profiling in 1999, and a fourth edition was published in 2011. This set of tools is used to develop a profile of a person’s interests and likes and dislikes, with a view to planning activity that best supports that individual. One part of these tools – the PAL checklist – is available to view online, but it is necessary to purchase the accompanying book (published by Jessica Kingsley Publishers) to use this checklist properly.

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