Help and services for people with cancer and dementia

If you are caring for someone at home it can help to ask family, friends and neighbours to support you. But there are also lots of health and social care professionals who can support you both at home. 

Admiral Nurses are specialist dementia nurses, who usually work for the NHS in communities. They support families living with dementia to help them cope.

You may also be able to get support for the person you care for from their:

  • GP
  • district nurse 
  • physiotherapists 
  • home helps
  • voluntary organisations.

If the person you care for is coming home from hospital, help and services can be organised for when they get home. The hospital staff can arrange for you to talk to a social worker about any help that you need. This is called a carer’s assessment. 

Before the person you care for has been discharged from hospital, make sure they have all the medicines they need. They should be given information about their medicines, any special diet they need, and advice on where to get more support.

Organising help and services

If the person you care for is coming home from a stay in hospital, any help and services needed can be set up to start when they get home. This is usually done by the hospital staff, with a social worker.

All hospitals and organisations have policies to make sure:

  • a person is safely discharged
  • the care they need at home has been organised.


Holistic needs assessment

The person you are caring for may have a holistic needs assessment before they come home. In the assessment, you will both be asked lots of questions about how you are feeling and what help you need. This is to make sure you get the right support. Everyone involved in the person’s care should have a copy of this, including their carer and GP. You can ask the nurse about this.


Planning for hospital discharge

If there are a lot of things to discuss before discharge, the ward or hospice staff may arrange a meeting. This may involve:

  • the person and their main carer
  • the doctor in charge of the person’s care
  • specialist nurses
  • an occupational therapist (OT)
  • a social worker.

If you are the main carer, you should be involved in any discharge planning. You should never be left to take the person home without the right help and support in place. If you are not sure of the plans, talk to the nurses or ward manager. They can discuss it with you. They can also arrange for you to see the social worker to talk about any help you may need. This is called a carer’s assessment. If you are not happy with anything that has been arranged, let them know.

Tips for planning a hospital discharge

  • If you find it difficult to discuss your needs with the staff, try writing them down. You may also find it helpful to have someone else with you. As well as giving you support, they can remind you of anything you may have forgotten.
  • If the situation changes, remember that plans can be changed. For example, when the person first goes home you may not need any help looking after them. But if they begin to become more dependent, you may need help with their personal care. This could include washing, dressing and eating.
  • The person you are caring for should be given information from the hospital or hospice to take home. This may tell you what medicines and diet they need, as well as where to get more support. If the information is not clear, ask for more details. You have the right to ask any questions you want.
  • When the person you are caring for is discharged, make sure they have any medicine they need. You will need enough to last until a new prescription can be arranged from the GP. You can talk to the hospital staff about this.


Carer's Assessment

As a carer, you can ask the social worker for an assessment of your needs. This is called a carer’s assessment. It is an opportunity to talk about any help you need.

Even if the person you are caring for has been assessed as not being eligible for support, you can ask for this assessment. You may be able to get support with respite breaks and help to look after the person you care for. It is important to keep healthy and balance caring with your life, work and family commitments.

If you have been assessed as needing social services, you may be able to get direct payments from your local authority. This means that you are given money to organise care services yourself, rather than the local social services organising and paying for them directly. You can ask your local council for more information about direct payments. Or you can visit GOV.UK or NHS Choices.

We have more information about caring for someone with cancer.


Who can help?

You don’t have to cope with caring for someone on your own. Building a support network of friends, family or neighbours can make a big difference. There are also community health and social care professionals who can support you.

The type and amount of support you get will depend on:

  • where you live
  • how the services are organised in your area.

GPs

A GP looks after people who are unwell and being looked after at home. They will assess the person you care for. They can then refer them to other services, such as nurses, social workers, occupational therapists and physiotherapists. If needed, they can also arrange for them to go into a hospital, nursing home or hospice.

District nurses

District nurses work closely with GPs. If needed, they will make regular visits to people at home. They will provide any nursing care the person might need.

Specialist nurses

Specialist nurses can give information and support about certain diseases, such as cancer or dementia. Most specialist nurses work in NHS hospitals or the community.

Specialist nurses do not usually provide nursing care. But they will:

  • assess needs
  • give advice
  • support people to understand their treatment options.

Many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer. You may meet them if you attend clinic or hospital appointments with the person you care for.

Admiral Nurses

Admiral Nurses provide the specialist dementia support that families need. When things get challenging or difficult, Admiral Nurses work alongside people with dementia and their families, giving them the one-to-one support, expert guidance and practical solutions they need to face dementia with more confidence and less fear.

Most Admiral Nurses work in the community for the NHS, and others work in care homes, hospitals and hospices.

To find out whether there is an Admiral Nurse in your local area:

Social workers

A social worker is responsible for assessing what practical and social help the person you care for needs. They are sometimes called a care manager.

If the person doesn’t already have a social worker, the GP or a nurse can arrange a referral. Or you could contact the local social services department. You will find their number in the phone book under the name of your local authority, council or your health and social care trust.

The social worker will visit and do a community care assessment or needs assessment. Each local authority has its own eligibility criteria, so the services that are provided will vary from area to area.

The hospital social worker can give you information about social services and benefits the person you care for may be able to claim. This might include meals on wheels, a home helper or hospital fares.

The social worker can also do an assessment of your needs as a carer. This is called a carer’s assessment.

Occupational therapists and physiotherapists

If the person you care for is unsteady on their feet and needs help moving around, you could ask their GP or specialist nurse to refer them to a physiotherapist or occupational therapist.

Physiotherapists give help and advice on exercises and ways to keep the person as mobile as possible.

Occupational therapists can suggest and arrange minor changes to their home, such as handrails or stairlifts. They can also help by ordering a wheelchair or equipment to make bathing or showering easier.

Help at home

The person you care for may be able to get help in the home. This can support them to stay independent and in their own home. It can also give you a break from caring.

Care attendants, carers or personal assistants come to the home to help. The type of help they give will vary depending on the area, but may include:

  • personal care, such as washing and dressing
  • doing some jobs around the house
  • staying with the person so you can have a break.

Home helps are available in some parts of the UK. They offer a variety of services, including cleaning, washing, cooking and shopping. The local social services department, social worker, community nurse or GP will know what is available in your area.

We have more information about professionals and services that can help in our section for people looking after someone with cancer.

Voluntary organisations and charities

Voluntary organisations and charities offer various kinds of help. This may include giving information, loans of equipment, grants and transport.

Some organisations have volunteers who can provide short periods of respite care to give you a break during the day. Others, including Marie Curie, provide befriending services for people who are on their own. They can introduce you and the person you care for to a trained volunteer who may be able to give one-to-one help and support.

The district nurse, specialist nurse or GP can tell you how to access these health and social care professionals and voluntary organisations. They will also be able to tell you about the specific types of help and support available in the area.

Back to Dementia and cancer

Advanced cancer and dementia

If it is not possible to control the cancer, the person you care for will be able to have treatments to manage any symptoms.