Northamptonshire Carers is aiming to offer help and support to those who are caring for someone who has been given the diagnosis of a life limiting condition.

End of Life can be a confusing term and is defined differently by various areas of health and social care.  It is sometimes referred to as a terminal illness, an incurable disease or as a condition needing palliative care.

This could apply to cancer patients, those living with heart failure, degenerative neurological conditions and:

  • COPD Chronic Obstructive Pulmonary Disease
  • Huntingtons
  • Sickle Cell
  • MND (Motor Neurone Disease)
  • MS Multiple Sclerosis
  • Dementia 

Health services tend to describe end of life as the last 6 weeks of expected life. 

Ideally, End of Life care should offer:  managing any symptoms, emotional, spiritual and psychological support, practical support, such as planning for the future or supplying equipment  giving as a good a quality of life as possible. 

Meet the Team

Support for the Carer

Caring for someone at End of Life can be difficult in many ways.  There are all sorts of emotions involved: shock, depression and anger for the carer and the person they are looking after.   Watching the person you care for struggle with day to day tasks, being in constant pain, undergoing distressing treatment and managing their own moods is all demanding.  You and the wider family could find yourselves feeling confused, distressed and exhausted.

You, or your loved one, may just have received a diagnosis of life limiting illness or be approaching the end of that journey. 

Northamptonshire Carers can:

  • Provide you with someone to talk to, a befriender who you can meet in person, keep in touch by phone or text.
  • Invite you to attend a support group. Either one of the many groups we run for carers in general across the county or one of the groups for people and their carers at End of Life 

(Groups for those approaching the end of life and their carers are currently running at Cynthia Spencer Hospice, and we are developing links with Lakelands in Corby and Cransley Hospice.

  • We could support with accessing the care, equipment and financial resources needed
  • Help with planning for future care and applying for Power of Attorney etc.
  • We also offer Carers Assessments 

Families may find it useful to request a needs assessment from the Unitary Authorities to help with care and support for the cared for person

Unitary Assessment North Nothamptonshire Council

Unitary Assessment West Northamptonshire Council

NC also offers a Bereavement Support Service which you can move onto seamlessly for support following the death.  Former Carers | Northamptonshire Carers Association (


There are many steps/stages of End of Life, often NHS will define this as last 6 weeks of life.  Northamptonshire Carers will provide our End Of Life services from the time of the diagnosis. This will allow for considering the emotional, financial and other impacts of that diagnosis at an early stage if you wish to.   We could support you in looking at:

Bucket List
  • what do you want to see?
  • is there somewhere you would like to go?  a part of the world you would like to see?
  • someone/some people you want to speak to

What is important to you with regard to your loved ones culture, spiritual and religious beliefs

  • Would you like to see a priest, minister, Imam, or other religious leader now or at the time of death
  • Is there a ritual/process cultural or religious practices require at any stage
  • Is there a specific request about how you would prefer to be treated and addressed

Where does the person dying want to die?

  • Do they want to die at home or in a hospice?
  • Is it possible to remain at home – what support is available?, who is available? What about medication, equipment etc. is it available/do you have access?
  • Have you been in touch with the local hospice, support is available from them at every stage

Hospice at Home

*Cynthia Spencer and Cransley also provide Hospice at Home services.

Financial planning

  • checking entitlement to benefits e.g. some end of life conditions lead to a SR1 form which entitles you to Attendance Allowance or PIP
  • what are your rights at work as a carer?
  • Does your family member wish to carry on working whilst receiving palliative care? 

DWP Financial Support Dcoument

If you need more information or support, you can call the Macmillan Support Line free on 0808 808 00 00.

Lasting Power of Attorney

There are two types of LPA  health and welfare and financial and property, you can choose to have either or both.  You must be over 18 and have mental capacity (i.e. be able to make your own decisions)  when you appoint someone. 

Health and Welfare LPA will affect decisions around:

  • Your medical care
  • Moving into a care or nursing home
  • Life sustaining treatment
  • Your daily care and routine

Financial and Property LPG will affect:

Bereavement and Death benefits 

This link gives a clear a run down of what you could be entitled to including a benefits calculator.

Benefits and financial support when someone dies - GOV.UK (

All of the above are part of and can be supported by what is described as Advanced Care planning, which put simply means the person at End of Life saying what they want to happen.  A really good guide is :

This can be a really difficult thing to do, there are many barriers to taking this forward.

  • How do you start this conversation?
  • Has the person come to terms with the diagnosis, it may need to be brought up sensitively and cautiously. 
  • Do you have a good relationship with them?
  • Are they determined not to “be a burden”, affecting the way they express their wishes.
  • Do they know what they want? Do you need to start with discussing options?

Dementia and End of Life

Many of the issues remain the same but planning end of life with a person with dementia can be complex.  Care planning and power of attorney are very necessary and might need to be considered at a relatively early stage when they still have mental capacity.  Considering end of life may conflict with a positive decision to live well with dementia. 

When someone is approaching end of life with dementia it is important to:

  • Provide a calm and familiar environment is usually best for a person with dementia at the end of their life. Stimulating the senses, for example with music and aromas the person likes, can also help. The focus should be on making sure the person is as comfortable as possible.
  • Take your time and take cues from the person.
  • Use what you know about the person to engage them. This could include hobbies and interests from their past. It can help to make use of a range of resources such as photos, objects and memorabilia.  (Marie Curie – Dementia towards the end of life)

Guides available:



Places to see





People to catch up with






Is staying at home possible?



Talk to GP and hospice

Will we need special equipment?

Who can help?

What professional care is available?


Who can help look after me?

Speak to family and friends?

Can they cope?

Is there support for them?









Funeral plans







Advance care planning (ACP) is a process of thinking, talking, recording and sharing. It includes making decisions about personal and medical issues.  

When someone has a life limiting illness, they may have to make decisions about what happens to them. This includes decisions on what treatment they might want, how and where they would like to be cared for, and where they would prefer to die. People may also wish to make decisions about their Will, what they want to happen at their funeral and what happens to their body after they die. This can ensure that their cultural and religious beliefs are considered.  

As someone’s illness progresses, they might become too unwell to make these decisions.  Making these decisions while they are able to ensures that they have a voice in what happens to them.  

Northamptonshire Carers is keen to make ACP much more widely available across the county.  We would like to develop this in consultation with carers and those who are living with lifelong conditions.  If you would like to be part of the workshop looking at how best to develop, organise and deliver this service please let us know. 

Advanced Care Plan PDF - Useful document to fill in around Planning Click Here

Useful Documents

Other useful things.....