Support and helpful tips for carers of dementia patients

There are as many as 700,000 people who are carers in the UK for friends or family who are living with dementia. With the number of people living with dementia continuing to grow, the number of carers will inevitably rise too.

Caring for someone living with dementia is a challenging task, with a variety of experiences ranging across a spectrum that can impact not only the life of the person they are caring for but also their own. Despite some of these challenges that can have both physical and psychological impact, the rewarding feeling of caring for someone living with dementia is profound.

It’s important to remember that as a carer, you also need to prioritise your own wellbeing. The effect of caring for dementia patients can often have an emotional toll, especially if you are caring for someone close to you. Seeing the changes friends or family undergo following their diagnosis can be hard, so understanding what you can do to help manage your own health and wellbeing is important.

 

Support for carers

Consider joining a carer support group

A big part of managing and processing the effects of caring for someone living with dementia is finding people who can relate to your situation. Finding a support network such as members of a carers’ group can have a positive impact on navigating the effects of being a dementia carer.

A shared experience can help you bond, finding someone that has relatable experiences and understands what you are going through can be comforting. Knowing you aren’t alone can make a big difference.

Carers groups can offer a range of benefits from social interaction with others in a similar situation, talks from professionals that can offer useful insight into caring for people living with dementia, or offering activities such as leisure activities and trips. Find your local support near you here.

Online support groups

If you aren’t able to join a local carers or support group, there are some online that can offer the opportunity to connect with others sharing your experience. They can offer a great place to talk to others, especially if there is no one you can meet with in person to chat with. Even just talking about your experiences can have a positive impact.

Here are some useful online supports that can help give advice and support for carers:

  • Admiral Nurses who give practical clinical and emotional support to families living with dementia
  • The Carer’s Trust who offer advice on their website for carers
  • Carers UK, a national charity for carers, providing information and support
  • Alzheimer’s Society who have information on all diseases that cause dementia and where to find support near you

Make time for yourself

Balancing the care you provide with your own personal time can be tricky, but it’s important to maintain time to care for yourself and of course to spend time with your family and friends too. One way you can achieve this is by sharing the caregiving even if it is only for a short time. If you don’t have the option of sharing the caring with a friend or family member, there are several professional services that can offer assistance, such as day centre or respite care specifically for people living with dementia.

Find your local day centre here from Age UK, and for respite care use this resource for finding more about it.

Access financial support

Even if you aren’t looking after someone full time, you may still be eligible for financial support as a caregiver. The government supports some carers through a range of benefits or credits available if they are looking after someone regularly. There are also support options available through some local authorities that can assist with caregiving. It is worth checking whether you are eligible to access any of these services, as every little bit helps.

Charities

Charities, such as Age UK and Alzheimer’s Society, can be a source of invaluable support and advice. Much of this can be accessed online or over the phone, with a range of resources specifically designed to help carers overcome the challenges of supporting someone living with dementia. It’s important to understand you shouldn’t feel guilty about needing your own support, as everyone’s situation is different.

 

Tips for caring for someone living with dementia

Research from Alzheimer’s Research UK found that the combination of the physical and psychological impact of caring for someome with dementia makes the role of carer particularly exhausting and challenging.

As such, there are some practical tips for how best to care for someone living with dementia. These can help ease the strain of providing such care, managing tasks more effectively and providing better care overall for the loved one. Discover some of these below:

1. Use clear communication

When it comes to interacting with the person you are caring for, using clear, concise communication can make it easier for both of you. Instead of asking open-ended questions, try to ask questions that require a simple yes or no answer. A person living with dementia may have lost their ability to connect information into clear ideas and responses, which can cause anxiety. Simple communication minimises the chances of anxiety for the person you are caring for.

2. Create a comfortable environment 

Dementia can negatively impact problem-solving skills, cognitive activity and can impair judgement. As such, the risk of injury is greatly increased.

It’s crucial to create a safe environment that keeps the person living with dementia out of harm’s way at all times. You can do this by:

  • Checking temperatures: When bathing, it’s important to check water temperature to prevent burns from occurring.
  • Preventing slips and falls: Avoid any clutter that could cause a fall such as extension cords, general ornaments and rugs. It’s also worthwhile installing handrails or grab bars where they are most needed.
  • Using locks: Anything that’s potentially dangerous should be locked away. This could include medicine, alcohol, cleaning substances and dangerous utensils.
  • Taking fire safety precautions: Keep matches and lighters out of reach and ensure a fire extinguisher is nearby. Don’t forget to check the smoke and carbon monoxide detectors for fresh batteries too.

3. Follow a routine

Even completing everyday tasks can be overwhelming for people living with dementia. To avoid causes of confusion or distress, following a daily routine can relieve the chance of anxiety-inducing tasks. Try to encourage getting out of bed, bathing, dressing, and eating at the same time each day.

4. Provide the right balance of stimulation

Television, among other activities, cannot always be enjoyed the same way by people living with dementia. To avoid unnecessary distress, the concept of slow TV helps carers and their loved ones or patients to enjoy ‘dementia-friendly TV’. My Life TV is a streaming service designed for people living with dementia that allows them to engage, relax and have fun. It can also enable carers to continue on with other tasks while the person they are caring for is entertained in a calming environment.

 

Resources

If you’d like to learn more, then there are very helpful guides online that will cover any further questions that you may have:

The impact of dementia on carers and family members

In the UK, there are around 700,000 people who are carers for a friend or family member with dementia. As the number of people living with dementia (PLWD) rises, this number will inevitably rise too.

There are many challenges that carers and family members face, and the impacts of dementia can be far-reaching. For example, there are often adverse physical and psychological effects, but for many, there can also be a rewarding side to caring for someone living with dementia.

 

Relationships with other family members may change

Dementia can change the relationships of the surrounding people. Family dynamics can be affected, both positively and negatively, as a result of a family member being diagnosed with dementia. For example, relationships between siblings can become especially strained when caregiving responsibilities are not perceived to be “evenly” distributed or disagreements on decisions relating to care and finances, as the amount of care needed for a parent increases.

According to one survey, 75% of carers feel that others don’t understand the effects of caring on their personal and social wellbeing, which can contribute to further resentment among families.

Males in these roles are statistically less likely to define themselves as carers and more reluctant to seek support, which brings additional challenges, and perhaps also points to broader issues of gender roles and stereotyping in our society. Additionally, carers may not want to burden other family members or even let them know about some of the more complex realities of the situation.

 

Carers can lose time for themselves

Studies have shown that 57% of carers lose touch with family or friends as a result of their caring responsibilities, leading to further isolation and emotional distress. Caring for a family member obviously also takes up time, with some caring for their loved ones up to 24 hours a day, seven days a week. They may have to take time out of work and away from their own families in order to care for them, and prioritise this over their hobbies and social lives.

In addition to the actual physical costs of caring for someone, such as higher energy bills, specialist equipment, and care products, this could potentially affect their financial situation, with a loss of earnings or limited career progression.

Reports also suggest that by 2030, dementia caring obligations will cost companies more than £3 billion. In an already tough economic climate, it can be a struggle for families to provide all the necessary care for PLWD, and some may need to make sacrifices elsewhere to make up for this.

 

Significance on physical and mental health

Being a carer for a PLWD can also have an impact on one’s health. Physically, caregivers may experience a decline in health and fitness, as they are spending less time looking after their own bodies.

The time they may have spent on exercise, sleep and eating healthily can be taken up by other responsibilities that they believe need to be prioritised in order to care for their relatives. Their mental health can also suffer, with studies frequently showing that carers are at an increased risk of stress and depression.

The nature of a carer’s relationship with their patient or family member who is living with dementia is likely to change, and witnessing their struggles and cognitive decline can be incredibly challenging emotionally. The unpredictable nature of dementia brings uncertainty and often anxiety to an already stressful situation.

However, there are many positives that come from caring for PLWD, as well as ways to alleviate some of the negatives. A study reflecting on the strains and gains of caring for those with Alzheimer’s found that up to 90% of caregivers had positive experiences, such as forming deeper bonds, sharing activities, personal growth and enjoying spending more time with their loved one.

Some families may experience a new closeness as they work together to deal with stressful situations and perhaps even develop skills and find hidden strengths. Compassion and empathy are two great qualities that can be learned or developed through caring for someone.

 

There is support available for carers

There is help out there for those who are struggling or maybe just need a little support or guidance. It can be a good idea to register as a carer with a GP and apply for a carer’s assessment. Some carers may be eligible for financial benefits such as a Carer’s Allowance, or other types of support from their local council.

Charities can provide invaluable support and advice, which can often be accessed online or over the phone. Carers should also look to family members, friends and even support groups, and not be afraid to ask for help. Everyone’s situation is unique, so there should be no need to feel guilty or ashamed about it. There is a lot to gain from sharing experiences and advice with others who are going through something similar.

It is important for caregivers to make time for themselves and their families. This can sometimes mean taking breaks from caring. For some, other friends or family may be able to take over or take turns being a caregiver, however temporarily.

For others, options may include day centres or respite care for the PLWD. As above, everyone’s circumstances and experience with dementia is different, so it is about finding what works best for their own family and achieving a healthy balance.

 

Dementia-friendly TV can have positive effects on PLWD, and their caregivers

My Life TV could help to reduce the negative impact of dementia on carers and family members. Watching ‘dementia-friendly TV’ can be a way for PLWD to relax, engage and have fun. Carers may enjoy sharing these experiences with their loved ones, and seeing the joy it brings them. It may also give them an opportunity to learn more about them, as they reminisce on past memories, or nostalgic TV and music from their younger years.

It has been shown to combat boredom and loneliness, and help reduce mental health issues for PLWD, perhaps making it easier for carers to deal with difficult behaviours. For those carers who are not spending as much time with them as they might like to, it could help to assuage some of the guilt.

Ultimately, caregivers may be able to find some more time for themselves, and relieve some stress. The benefits of dementia-friendly TV on PLWD will also influence their carers and family members, and make the caregiving experience a much more positive one.

The benefits of dementia-friendly TV on quality of life

Dementia is an umbrella term for a range of related symptoms that affect the brain. These often include memory loss, reduced cognitive ability, impaired communication and language skills, and changes in mood and behaviour.

In the UK it is estimated that around 920,000 people are living with dementia, and the vast majority of these are aged over 65. As we have an ageing population, this number is likely to rise.

Mental health and wellbeing can be severely affected for People Living with Dementia (PLWD). This can obviously impact the quality of life, not only for people with dementia but also those around them, such as family members and carers and the Covid 19 crisis has exacerbated these issues.

Prior to the pandemic, the bleak reality was that many PLWD in care homes and at home experienced poor mental health because they were isolated without mental stimulation. Up to 50% of PLWD experience depression which is double the 25% prevalence amongst older people more widely.[1][2] Research has shown that two significant factors in this are social isolation and loneliness and the lack of mental stimulation.[3] The majority of care home residents with dementia spend most of their time engaged in no activity at all, with unstructured time accounting for two-thirds of their day.[4] The COVID-19 crisis has made these problems even worse; 79% care homes have reported a decline in the health and wellbeing of PLWD because of isolation.[5]

    

 

TV specially created and adapted for people living with dementia

Television could be one of the easiest and most cost-effective ways to address this issue; people aged 65+ watch over six hours of broadcast TV every day on average in the UK.[6] However, mainstream television is not dementia-friendly. 850,000 PLWD (and rising) will be unable to watch normal TV because of cognitive impairment when their condition progresses; memory problems, a decrease in concentration and impaired hearing mean that PLWD struggle with fast plots, complex information and loud music.[7] Put simply, the lack of dementia-friendly television is a barrier to improving the mental health of PLWD.

My Life TV, the dementia-friendly channel is addressing these challenges and enabling PLWD to watch the shows they want to watch when they want to watch them. It is a web-based video on-demand TV platform and being based on the internet means it is easily accessible to PLWD at home or in any care setting via a computer or smart device, and can be cast to a TV.

All of the dementia-friendly content is “feel good” with a broad range of shows available, from interactive programmes like quizzes and armchair yoga, to passive entertainment like nature programmes and archive news. The content is curated for the cognitive needs of the audience and the interactive content created by our in-house production team.

 

Mental health boost

My Life TV ran a Feasibility Pilot with very positive results, involving a number of participants in care homes and people also living in their own homes. 94% caregivers said My Life TV can improve the mental health of PLWD, and care staff reported it can keep residents “occupied”, “improve communication”, “increase compliance with staff” and “support in improving behaviour that challenges

So, with that endorsement, My Life TV  launched recently with its ground-breaking new streaming service, specifically designed for people living with dementia. Having already formed some great partnerships with the likes of the British Film Institute, Getty Images, British Pathe, Fremantle Media, and Royal Botanic Gardens, Kew, the on-demand platform offers lots of excellent dementia-friendly content.

There is a mixture of “lean in” and “lean back” programmes, suitable for all stages of people’s dementia journeys.

So far, the results of dementia-friendly TV have been incredibly positive and promising, and the hope is that it will become an even bigger success and reach across the UK to improve the lives of people living with dementia.

 

[1] Zubenko, G.S., Zubenko, W.N., McPherson, S., et al. (2003) ‘A collaborative study of the emergence and clinical features of the major depressive syndrome of Alzheimer’s disease’, American Journal of Psychiatry, 160(5), p.857–66. Available at: doi:10.1176/appi.ajp.160.5.857 (Accessed: 21 January 2021)

[2] (2021) Mental health statistics: older people Available at: https://www.mentalhealth.org.uk/statistics/mental-health-statistics-older-people (Accessed: 5 February 2021)

[3] Daly, S., Allen, J. (2016) Inequalities in mental health, cognitive impairment and dementia among older people [Online] Available at: http://www.instituteofhealthequity.org/resources-reports/inequalities-in-mental-health-cognitive-impairment-and-dementia-among-older-people/inequalities-in-mental-health-cognitive-impairement-and-dementia-among-older-people.pdf (Accessed: 10 March 2021)

[4] Lucero, M., Pearson, R., Hutchinson, S., Leger-Krall, S., Rinalducci, E. (2001) ‘Products for Alzheimer’s self-stimulatory wanderers’, American Journal of Alzheimer’s Disease and Other Dementias 16(1), p.43–50. Available at: https://doi.org/10.1177/153331750101600104 (Accessed 10 March 2021)

[5](2020) Thousands of people with dementia dying or deteriorating – not just from coronavirus as isolation takes its toll [Online]. Available at: https://www.alzheimers.org.uk/news/2020-06-05/thousands-people-dementia-dying-or-deteriorating-not-just-coronavirus-isolation (Accessed: 21 January 2021)

[6] (2020) OFCOM Media Nations 2020: Interactive Report [Online]. Available at: https://www.ofcom.org.uk/research-and-data/tv-radio-and-on-demand/media-nations-reports/media-nations-2020/interactive-report  (Accessed: 21 January 2021)

[7] Funnell, L., Garriock, I., Shirley, B. and Williamson, T., (2019) ‘Dementia-friendly design of television news broadcasts’ Journal of Enabling Technologies, 13(3), p.137-149. Available at: https://doi.org/10.1108/JET-02-2018-0009 (Accessed: 21 January 2021)