What is a dementia care pathway?

A dementia care pathway describes the care a person receives from the moment they consult their GP about short-term memory loss and then receive a dementia diagnosis, right up until the very end-of-life. In 2009, the UK Government’s ‘Living well with dementia: a national dementia strategy’ provided a new strategic framework for making quality improvements in dementia services and addressing well publicised health inequalities. The dementia care pathway strategy was backed by £150million in additional funding and outlined 17 recommendations that the government required the NHS, local bodies and other organisations concerned with dementia care to implement to improve their services. In response to the Government’s strategy, many healthcare providers and independent agencies developed their own versions of the dementia care pathway.

Highly personalised one-to-one care from a Professional Live-in Carer in just cannot be provided in a care home. The way you choose to live your life will be restricted by imposed routines – when to get up, eat your food and when to socialise. For couples, live-in care in the means you can stay together as a loving couple with the care and support you need. This is not guaranteed if both of you move into a residential care home. Live-in care for couples is a very cost-effective option when compared to needing two packages of care in a care home – with live-in care in the there is only a nominal additional fee to provide care to a couple.

Requirements of a dementia care pathway

There are three key principles that any dementia pathway should be based upon:

Raising awareness and understanding of dementia
Obtaining an early diagnosis and support for those living with dementia and their families
Being above live well with dementia

Whilst the condition affects people in different ways at each stage of the condition, with needs to information and services evolving as the condition progresses, a strong dementia care pathway should:

Be accessible to anyone diagnosed with dementia regardless of age or background
Afford the person living with dementia due dignity and respect, acknowledging their individuality and abilities
Encourage the person living with dementia to retain their self-reliance, control and independence by nurturing their abilities and strengths
Enable dementia care providers to continue caring for as long as is practical
Tailor the care received to the individual as fully as possible to help the person with dementia enjoy the best quality of life
Be easily understood by a person living with dementia and their carers
Encompass the principles embodied in ‘Living well with dementia: a national strategy’

Living well with dementia at home

Our care pathway for dementia starts at home. We know receiving care in the comfort, safety and familiarity of your own home has far reaching benefits in improving overall health and well-being for a person living with dementia. Moving at any stage in life can be disruptive and stressful. When an individual is living with dementia the process of moving to a care home, away from their much-loved home full if its treasured possessions and memories can be really heart-wrenching and daunting, affecting their ability to live well with dementia. We know that staying at home and receiving compassionate, one-to-one care from a highly trained and well matched professional carer improves quality of life and health outcomes for an individual living with dementia. Our personalised approach to providing high-quality live-in care for a person living with dementia, with a fully managed and flexible service that families can rely on is setting the standards in live-in care.

How might dementia affect someone in the later stage of life?

During the later stages of life, someone with Dementia can display symptoms of death, but these can last months. This period of time is very upsetting and a time of uncertainty, as it is difficult to know when a person with dementia is coming to the end of their life.
However, there are some symptoms that may indicate the person is at the end of their life including:

Limited speech (single words or phrases)
Needing help with everyday activities
Eating less and swallowing difficulties
Incontinence and becoming bed bound

A person is likely to be nearing the end of their life when these symptoms are combined with frailty, recurrent infections and/or pressure ulcers.

When a person gets to within a few days or hours of dying, these symptoms are also common:

Deteriorating more quickly
Loss of consciousness
Inability to swallow
Becoming agitated or restless
Irregular breathing
Cold hands and feet

These are all part of the dying process and it’s important to be aware of them so that you can help your loved ones understand what is happening.

How can I support someone with dementia at the end of life?

Knowing your loved one will make it easier for you to deliver person-centred care. You will be able to cater for their likes and dislikes, while also being able to focus on what they need and require. If your loved one is unable to communicate with you, speak to the wider family, friends or Power of Attorney for health and wellbeing.

How can I communicate with someone with dementia at the end of life?

Communicating with your loved one is very important, especially during the later stages of life. People with dementia are at times at risk of not receiving the care they desire due to poor communication and lack of understanding from the caregiver.

People with dementia often communicate their needs and feelings through non-verbal communication, for example; body language, gestures and facial expressions.

The following tips may help:

It’s important to continue to communicate with the person, even if you think they don’t understand.
It is important to remember that the person still has feelings.
Try to maintain eye contact
Think about your non-verbal communication, your body language, and tone of voice.
Touch and human contact are important. Sitting with the person, talking to them, brushing their hair and holding hands could help.
A calm and familiar environment, like their home, is usually best for a person with dementia at the end of their life. Stimulating the senses with music and familiar aromas, can also help. Try to make the person as comfortable as possible.
Take your time and take cues from the person.
Use your knowledge about the person to engage with them. Speak to them about their past hobbies, holidays and experiences. A photo album can be useful.

Useful resources

To support you and your family we have created a useful dementia care guide which provides you with information and advice on how to provide person-centred dementia care following a diagnosis of dementia. There is also a number of dementia charities across the UK who have adopted a dementia care pathway that ensures families have help, advice and support when they need it most, including dementia UK and the Alzheimer’s society. The NHS has a useful living well with dementia guide that provides practical tips and guidance so people living with dementia can live a fulfilling life.