The Helpd guide to sensitive dementia care

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850,000 people are currently living with dementia in the UK, and the number is expected to rise to over 1 million people by 20251. With the disease expected to continue its upward trajectory to reach 2 million people by 2050, many of us will be either directly or indirectly affected by the disease during our lifetime.

Because of the degenerative nature of dementia, and the fact that it impacts brain function, a diagnosis can be particularly upsetting. With the search for a cure a priority among researchers around the world, the hope is that it won’t be too long until we have treatments that are effective at halting the disease.

Until then, it is important to focus on helping people with dementia to live well, live independently wherever possible, and to treat them with sensitivity and dignity.

In this guide, we’ve brought together a series of resources and ideas from charities, healthcare organisations and support services to guide you through how to access, and ask for, sensitive dementia care.

Treating each person as an individual

No person wants to be defined by their illness so the overriding principal when giving or seeking care is to begin with treating the person as an individual. We all have our own likes, dislikes and life stories and every person’s experience of dementia will be an individual one.

The Alzheimer’s Society has a wealth of excellent resources2, including a guide on how to understand what a person with dementia may be experiencing, and how to talk to them about it. Advice includes:

  • If the person finds verbal communication difficult, speak slightly more slowly but with a natural tone of voice
  • Non-verbal communication is extremely important so make sure you maintain natural eye contact
  • Avoid sudden movement and tense facial expressions
  • Listen to the person. Give them time and remove distractions like background noise. Remember too that they may want to talk about feelings, not just facts.

Source: Alzheimer’s Society2

Hospital care – the Butterfly Scheme

Many people dislike staying in hospital and for those with dementia it can be especially disorientating due to unfamiliar surroundings and potentially dozens of staff passing through their life each day. The Butterfly Scheme was created with the express aim of empowering people living with dementia to be able to indicate to staff via a symbol that they may require additional or specialised help. In participating hospitals, the scheme’s symbol triggers a taught care approach, including a specific set of dementia care skills. This helps trained staff members to provide the right kind of care according to the individual’s wishes.

 

Adopted by 150 hospitals across the UK and Ireland, the Butterfly Scheme was highlighted for its positive impact in Age UK’s ‘Promising Approaches to Living Well with Dementia’ report3.

 

Adopted by 150 hospitals across the UK and Ireland, the Butterfly Scheme was highlighted for its positive impact in Age UK’s ‘Promising Approaches to Living Well with Dementia’ report3.

 

Care at home

People living with dementia may have additional needs to help them with day-to-day tasks, but this should not be at the expense of the same things that we all need to live fulfilling lives:

 

  • Positive relationships
  • Personal wellbeing
  • Active daily lives

 

Positive relationships

For friends and family members, it can be useful to refer to the resources on the websites of the Alzheimer’s Society and Dementia UK. Both outline what dementia is, the impacts on an individual’s emotional and physical wellbeing and how to look after yourself when you’re caring for someone with dementia.

 

There is also the newly created role of Primary Care Navigator or ‘PCN’. A PCN is a healthcare professional who is tasked with finding support for people with dementia, and their families, through better navigation and social – not clinical – prescribing. The role was created after it was discovered that many patients with dementia visiting their GP had needs that related to social care and wellbeing. To find out more about PCN provision in your area, ask your GP.

 

An additional source of help and support can be found via Dementia UK’s Admiral Nurses who provide specialist 1-to-1 dementia support to individuals and their families. To find out where your nearest Admiral Nurse is located, visit: https://www.dementiauk.org/get-support/find-an-admiral-nurse/ .

 

Personal wellbeing

Alongside general hygiene and health factors, the home environment is critical to those living with dementia. Understanding the person’s preferred daily routine, cherished items and favourite meals will all help in terms of the individual’s overall sense of wellbeing.

 

Sleep is a crucial factor in wellbeing and can become difficult for people living with dementia, which in turn impacts those caring for them. Night time waking, restlessness and struggles to maintain a routine are commonplace and can be hard to successfully address. The Alzheimer’s Society has created an online guide including advice on how to help someone experiencing challenges with sleep here: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sleep-and-night-time-disturbance

 

The physical home environment is also important in helping someone with dementia to successfully live independently or remain in their own home. The NHS has a useful guide4 on how to make your home more dementia friendly which includes the following tips:

 

  • Reduce excess noise which can create distraction and cause upset
  • Improve lighting to reduce the risk of falls
  • Use contrasting colours to help items stand out
  • Clearly label doors with symbols to indicate which room they lead to

 

It may be possible to extend the amount of time that an individual living with dementia can stay in their own home by engaging the services of a carer, either on a visiting or live-in basis or as a means of providing respite for the main carer.  This can be to assist with individual tasks such as toileting or medication or to provide ongoing companionship. It can also overcome issues associated with local authority carers arriving at unfamiliar hours / inconsistency in the person providing care.

 

Active daily lives

It is important that people living with dementia have the opportunity to extend their social circle and make new friends. Provision of services will depend on your location, but the Alzheimer’s Society supports a wide range of groups across the UK ranging from COGS clubs, which offer a programme of activities and a few hours respite to carers, to Dementia Cafés which provide support and conversation in a café-style setting. To find out what services are available in your area, visit: https://www.alzheimers.org.uk/get-support/your-support-services

 

Care in a care home

For some people, once their dementia progresses beyond a certain stage, a care home becomes the best option. In these circumstances selecting the right home is vitally important to ensure that the transition and eventual move is successful.

When selecting a care home, we would always recommend:

  • Taking your time
  • Meeting staff and residents
  • Conducting thorough research
  • Visiting more than once

First impressions definitely count (cleanliness, atmosphere, staff attitude) as do the decisions that take a bit longer (affordability, planning the transition). If you have found a care home that you think is a good fit for your loved one you should also consider the other factors discussed in this article about the importance of maintaining positive relationships. With that in mind we recommend you think about:

  • How accessible it will be for family members and friends to visit
  • Access to nearby facilities should you want to spend time with your loved one outside of the care home setting
  • Activities undertaken by the care home in partnership with external groups – do they, for example, having visiting music therapists or have the ability to engage with other community groups?
  • Ongoing communication with the care home – what do other relatives of residents have to say?

The Alzheimer’s Society has a comprehensive care home checklist which you can access here: https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes-checklist

We would further recommend reading the official inspection report of any care homes that you visit. You can find them on the Care Quality Commission website here: https://www.cqc.org.uk/what-we-do/services-we-regulate/find-care-home

Further help and support

This guide is designed as a brief introduction to accessing sensitive care, for more detailed information and help you may also find the following useful:

Age UK: www.ageuk.org.uk

Alzheimer’s UK: www.alzheimers.org.uk

Dementia UK: www.dementiauk.org

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At Helpd, we provide a dedicated online introductory service that puts you in control of finding care that is sensitive to the needs of you and your loved ones – from single services like washing and dressing to full-time live-in care and companionship. To find out more about what we do, visit www.helpd.co.uk

If you enjoyed reading this post, why not read another! Live in care guide

  1. https://www.alzheimers.org.uk/about-us/news-and-media/facts-media
  2. https://www.alzheimers.org.uk/get-support/help-dementia-care/understanding-supporting-person-dementia#content-start)
  3. https://www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/reports-and-briefings/health–wellbeing/rb_feb2018_promising_approaches_to_living_well_with_dementia_report.pdf
  4. https://www.nhs.uk/conditions/dementia/home-environment/