The National Care Line
0800 0699 784

Caring For Someone
With Dementia

The majority of people with dementia live at home, where family and friends provide most of their care. Caring for someone you love with dementia is a difficult task because dementia is a progressive brain disorder that not only affects memory, but gradually destroys a person's ability to learn and carry out daily activities. There are several different types of dementia with the most common being Alzheimer’s, vascular dementia and dementia with Lewy bodies.

The beginning of the disease is almost imperceptible with occurrences that can easily be put down to just forgetfulness or not having the time to concentrate properly. But gradually as the symptoms become more developed, they become severe enough to interfere with normal activities of daily life.

Diagnosis

Diagnosing dementia in the early stages can be difficult and the first step is to see your GP who will refer you to an appropriate specialist consultant. In obtaining a diagnosis the specialist will talk to you and those close to you, you will have a physical examination and undertake memory tests and/or brain scans. The Mini Mental State Examination (MMSE) is the most commonly used examination when a diagnosis for dementia is being considered.

Sources of help

If Dementia is diagnosed, it is important to get help and plan ahead as this will make it much easier to manage things later on. Try to find out as much as you can about the illness and one of the best sources for help and advice is the Alzheimer’s Society. They have a national helpline for people affected by dementia or worried about their memory. The number is 0300 222 1122 or you can email them at helpline@alzheimers.org.uk

When a person needs help with their daily activities or care, the local authority has a duty to carry out a community care assessment to assess what a person needs and then to arrange services which will help to meet any needs that fall within their eligibility criteria – rules that set out what type of needs the local authority will meet. The local authority assessment process also applied to carers and it is a good idea to have both done at the same time. A person's financial situation will be taken into account and they may be asked to contribute towards the cost of these services.

Some services are available through the health service and you should ask your GP or hospital what is available in your area. There may also be help available from voluntary organisations and your local social services should have details of these.

As the memory loss and other symptoms progress, to care for someone with dementia such as Alzheimer’s can become emotionally and physically challenging. It is important that any services for supporting the person with dementia, their carer and their family are accessed when first needed, because the amount of time and energy that caregivers and families will spend taking care of their loved one will increase over time and it is important that support is in place for them.

Caring for someone with dementia

It is important that someone who has been diagnosed with dementia remains as independent as possible and continues to carry out their normal activities and any occupation for as long as they are able.

While people with mild dementia often experience problems with short-term memory, they may recall memories from the distant past. Looking at old photographs and keepsakes may lead to conversations about people and past events, and can be enjoyable for everyone involved.

It is very hard for a person with dementia to cope with life and the care and support that they receive is vital to their well being. As the dementia progresses and gradually destroys a person’s ability to learn, reason or communicate, it is important for those around them to give constant reassurance, support and encouragement so that the person continues to live life as normally as they can.

People with dementia may experience changes in their personality such as aggression, agitation, anxiety. They may also suffer from hallucinations or delusions such as people in the house or garden. If this happens they can become very worried and upset about the situation as it is very real to them and it can take a great deal of reassurance to calm things down.

If you are caring for someone with dementia, the following tips will to help you to cope:-

  • Make sure you have time for your friends and relatives so that you see new faces and have someone to talk to if you need it. Find someone to watch over your charge, perhaps a relative or friend, whilst you have some to do what you want to do and avoid getting isolated.
  • Join a support group so that you can meet other people in a similar situation. You know you are not struggling on alone when you can talk to others going through the same difficulties.
  • Try to keep things to a routine as people with dementia find changes difficult to cope with. Go out for walks and visit friends and keep to as normal a life as possible.
  • Create memory aides such as boxes of favourite things that you can open and talk about together. Don’t worry if the information that comes back to you seems ‘different’, it is probably making perfect sense to them, and as long as they are happy, live with it.
  • Be flexible, things will change as the disease progresses. For example, if the person you are caring for does not want to, or cannot do something in one way, try another. Adapt, don’t make an issue about it.
  • Be prepared for changes in your loved one’s personality. Remember it is the illness doing this and not the person you care about
  • Learn as much as you can about the illness as this knowledge will help you to cope with things as they arise. New treatments are coming along all the time, keep abreast of developments

Dementia is a cruel illness that robs you of the person you love and this can be particularly heart breaking for those caring for them. However, just occasionally you may have a glimpse of the ‘old’ person that you loved and makes for very special heart warming moments whilst caring for them.

Over the course of the disease, knowledgeable care and support can improve the quality of life for you and the person that you are caring for from the beginning to the end so make sure that you get the help you need and take all the support offered.

Legal and Financial issues

When planning ahead it is important to include any arrangements such as any legal decisions such as a Lasting Power of Attorney or Making a Will whilst still having the ability to make these decisions. Do seek the advice of a solicitor to ensure that all documents are completed correctly and are legally valid as this can cause a great deal of extra expense especially in relation to a Lasting Power of Attorney where, once capacity is lost, the only recourse is to make an application to the Court of Protection to become a Deputy.*

*There is a fuller explanation about becoming all legal matters in the following pages on this site on the following pages:

It is important to remember that people with dementia have not lost their right of to take part in the decisions which affect their lives. Under the Mental Capacity Act 2005, all adults have the right to make decisions for themselves, unless it can be shown that they are unable to make them, and that everyone should be given appropriate help and support to make a decision.

When caring for or working with a person with dementia, any actions or decisions taken on their behalf because they are unable to make the decisions for themselves, must be in their best interests as per the supporting guidance for those whose actions come under the Mental Capacity Act 2005.

There is also a provision under the new Mental Capacity Act for people to make advance decisions – these were previously referred to as living wills. It means that a person can decide what interventions they would want and what they would like to happen at the end of their life, whilst they are still able to make these decisions. This is terribly helpful for their carers and it ensures that the choices and preferences a person makes form the basis of their care. 

When care in a home is needed

Dementia is a life-shortening illness but the life expectancy of a person with dementia is not predictable and depends upon many other factors such as physical composition and emotional resilience. As time passes and the disease progresses, a person will become more and more dependent upon their carer.

When you cannot provide the care needed any longer, it is important to find a home that specialises in dementia care. With two-thirds of the residents in care in the UK having some form of dementia, a home providing an excellent standard of care is vital to the quality of life of those with this condition.

It is important that the home chosen follows the principles of person-centred care, seeing the person as an individual and taking their whole range of abilities, needs, interests and preferences into account, rather than just concentrating on their dementia and how to treat the symptoms this causes. It also means treating the person with respect and dignity, offering support and understanding and most of all ensuring that their right to be included in any decisions about their care is not lost.

What if the care is not up to standard

Sometimes the care provided is not up to the expected standard and it is important to raise any concerns that you have as soon as you can. You should ask for a private meeting so that you can raise the matter and discuss how things can be improved. If the outcome of this meeting brings no improvement, you should ask for a copy of the care home’s complaints procedure so that you can then decide whether or not to proceed to making a formal complaint.

A complaints procedure, setting out timescales and stages for complaints is a requirement of the registration procedure and all homes must be legally registered in order to carry out their business. All complaints should be dealt with within a maximum of 28 days with a good procedure not only investigating the cause of the complaint, but also identifying any weaknesses in the system and areas for improvement. The care home must keep a record of the complaint and the outcome including any actions taken.

If the outcome of the investigation is not satisfactory, you can take your complaint to the Local Government Ombudsman who can provide an independent complaints review service. They can be contacted on 0300 061 0614 or by email on advice@lgo.org.uk

NHS Continuing Care

NHS continuing healthcare or fully funded NHS care is when a package of care is provided solely by the NHS which can be provided in hospital, care home or in an individual’s own home. Applying for this funding is a very grey area and not an easy process to go through or understand because it is awarded depending upon whether a person’s primary need is a health need.

If your overall care needs show that your primary need is a health one you should qualify for continuing healthcare. This will be assessed by 4 key indicators:

  • nature – the type of condition or treatment required including quality and quantity
  • intensity – one or more needs which are so severe that they require regular interventions
  • unpredictability – unexpected changes in your condition that are difficult to manage and present a risk to you or to others
  • complexity – symptoms that interact, making them difficult to manage or control

For further help and advice concerning your eligibility to NHS Continuing care funding, you can request a call from our solicitor by clicking this link

Following many years of campaigning by the Alzheimer’s Society, the Department of Health produced new guidance setting out the factors for deciding eligibility for NHS continuing healthcare. The document is called National Framework for NHS Continuing Healthcare and NHS funded Nursing care.

The National Dementia Helpline

The Alzheimer’s Society website is very informative and was a great source of information and comfort to me when my own mother fell victim to this cruel disease. For further information visit the Alzheimer's Society National Dementia Helpline 0300 222 11 22  You can also email them at: helpline@alzheimers.org.uk

Opening times: Monday to Friday 9:00 a.m. - 5:00 p.m. and Saturday & Sunday 10:00 a.m. – 4:00 p.m.

The National Dementia Helpline provides information, advice, and support through listening, guidance and appropriate signposting to anyone affected by dementia.

Cost of calls: Calls to the Helpline cost no more than the national call rate and may also count towards any inclusive minutes in a phone contract. This rule applies to calls from any type of line including mobiles, BT, other fixed line or payphone.

Talking Point – online forum

Talking Point is Alzheimer's Society's online support forum, for anyone affected by dementia. It's open 24 hours a day, 7 days a week, and is a place to ask for advice, share information, and join in discussions. forum.alzheimers.org.uk

For further information on funding care please click here.