Statement 6: People with dementia are enabled, with the involvement of their carers, to access services that help maintain their physical and mental health and wellbeing

Key messages

What does this mean for care providers?

The value of staying physically and mentally well for people living with dementia cannot be under-estimated. And yet it can be difficult to access the services that are needed to do so, sometimes resulting in a need for much higher levels of support.

Care providers have a responsibility to work with the individual and their family to request the support needed, and to advocate on their behalf when required. This will be much easier to do if everyone knows what changes indicate the need to refer to a service, and who to contact to make that referral. It is also extremely beneficial if care providers can share this information with family, and if they also understand the importance of prevention, seeking help early, and reducing the strain on carers. This information sharing should be part of the regular service review.

While the shortage of health services in some areas is undoubtedly problematic, care providers can take some steps to improve things – forming a strong relationship with GP surgeries and other services where possible; linking with other managers to share ideas and press for improvements; and to capture and highlight the views and wishes of the people with dementia they are supporting. If anyone receiving care and support needs to stay in hospital, care providers (and care homes in particular) should ensure that any information that may assist hospital staff in providing effective care is sent with them. The Alzheimer's Society 'This is me tool' can be particularly helpful.

Why is this important to carers?

Maintaining physical and mental health and wellbeing is a life-long quest – and dementia presents particular challenges in this regard, for both people with dementia and their carers.

People with dementia may struggle to report changes in their health or to communicate clearly that they are in pain. They may experience a number of health problems in addition to the dementia. Carers have a vital role to play in supporting people with dementia to access suitable healthcare and support at the right time.

Carers also face challenges ensuring that their own physical and mental health needs are being recognised and met – because of the demands of the caring role, but also because of difficulties with accessing support.

Will my relative who has dementia be called for routine health screenings?

Yes. The Equality Act 2010 made it illegal to discriminate against anyone because of age or disability so the person with dementia has access to routine screenings, just the same as anyone else.

You can provide critical practical help for the person with dementia when they have contact with the health and social care system, for example by helping the person to remember and get to appointments, as well as by helping the person to report on recent problems or concerns at the appointment.

Carers also have the right to access health care, screenings and regular dental appointments. This is a good example of some basic needs that you might raise in a carer’s assessment – with a view to support from the local authority to ensure you needs are met, for example through day support or 'respite' care.

My relative with dementia has sensory loss too – what are the implications of this?

If a person with dementia has some form of sensory loss – for example, deterioration in hearing or vision, both common in older age – it will pose extra challenges. There is a real danger that their difficulties will not be investigated properly, perhaps because the problem has not been identified or monitored properly.

Sensory loss can exacerbate confusion in someone with dementia, so it is important that a person's needs are assessed thoroughly. If possible, sensory assessments should be done by a specialist with training in dementia care.

You can find more information about dementia and sensory loss on the Dementia Gateway.

How else can I support my relative with dementia to maintain their physical and mental health?

You can play a vital role in supporting the person with dementia to stay connected with their local networks and activities – even after a diagnosis of dementia, and for as long as possible into the course of the illness – and this is key for maintaining physical and mental health. Many positive things can come simply from encouraging the person to continue with basic daily activities (for example, the person collecting a daily newspaper from the local shop). The SCIE Dementia Gateway website has a section on Keeping active and occupied and the Alzheimer's Society factsheet on Staying involved and active are two good places to start.

There may come a time when a dementia-specific group feels more comfortable and suitable – start with the online Dementia Web information service as a way of finding local groups that offer support for people with dementia. Some areas have walking groups for people with dementia, others offer reading groups – it varies considerably from area to area as to what these groups offer and which organisation runs the groups. Some arts venues offer events specifically aimed at people with dementia – for example a tour of an art exhibition, facilitated by a skilled tour guide.

If the person with dementia lives in a care setting (for example sheltered housing or a care home), there should be some activities on offer. The person may need some encouragement or practical help to be able to participate – but this should not preclude their involvement.

You may also want to investigate how assistive technology can support the person with dementia to maintain their physical health. Assistive technology encompasses an enormous range of devices, aids and adaptations. One example is a reminder system for helping a person with dementia who lives alone to remember to take medication. Start with the AT Dementia website.

Key resources

Practical tips and information

SCIE's GP Services for older people: a guide for care managers provides useful advice and information for care home managers.

The section Support following diagnosis on SCIE's Dementia Gateway provides guidance for care staff, and particularly those supporting people living at home, as to what they can do to help someone stay physically and mentally well following a diagnosis.

Dementia UK provide Admiral Nursing DIRECT, a national helpline and email service, provided by experienced Admiral Nurses who offer practical advice and emotional support for anyone affected by dementia. This includes care staff and carers, people living with dementia and those worried about their memory.

The Alzheimer's Society's Dementia Advisers provide quality information and signposting to people living with dementia and their carers, and may be a valuable link for care providers to pass on if further support is needed.

SCTV

Further information

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.

Visit the site

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

This 2013 resource from the Council of Occupational Therapists has 5 different versions of this guide– 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.

View the resource

Staying involved and active

The Alzheimer's Society produces a wide range of information resources on dementia. From its range of over 80 factsheets, some in particular relate to physical and mental health and wellbeing, including Staying involved and active (521), Exercise and physical activity for people with dementia (529), and Mobility strategies.

View the resources

The Walking Group

This 10-minute film from the Innovations in Dementia CIC records a walk in Wiltshire completed by The Walking Group, who are members of the Forget-Me-Not Centre in Swindon (a day service for younger people with dementia). The group go for regular walks in the countryside and in this film they talk about how positive the group is for their own sense of wellbeing.

Watch the video

Tools

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

As well as setting out a wide range of practical ideas on how to support care home residents to continue day-to-day activities that are important to them, this free online resource from the Council of Occupational Therapists includes an 'Enabling activity' audit and an action plan to review and improve activity provision in care homes.

View the resources

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 an individual’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 to use this checklist properly.

Visit the site

Wood if we could

The Wood if we could guide, developed by Dementia Adventure, the Woodland Trust and Activity Team, includes three practical tools for group leaders trying to support people with dementia to go on an adventure in woodlands: criteria for woodland selection (where to go), a risk/benefit assessment tool (what to look out for), and an adventure checklist (what to take).

View the document