FACT SHEET: CARING FOR THE PERSON WITH DEMENTIA
This section of the website has information about many aspects of caring for a person with dementia. A useful starting point is: understanding and respecting the person with dementia.
When the person with dementia starts to realise that their memory and mental abilities are declining they feel anxious and insecure. They need a lot of reassurance and support. Family, friends and other carers need to do all they can to help the person keep their sense of identity and feelings of self esteem. This is important throughout the illness, even when the person is unable to understand that it is dementia causing their behaviour and moods to change.
Supporting the person with dementia to express their feelings
- Dementia affects people’s thinking, reasoning and memory – but the person’s ability to feel remains unchanged. Especially in the early stages encourage the person to talk about how they are feeling and try to put yourself in their shoes.
Make time to offer support rather than just ignoring them.
Don’t brush their worries aside. Help the person seek medical advice.
Treating the person with respect
It is very important that the person with dementia is treated with respect. The person is still a unique and valuable human being despite the illness.
This Fact Sheet looks at ways that you can help the person feel valued and good about themselves.
Throughout the illness the person needs to feel respected. Remember that their changed behaviour is caused by the illness and is not deliberate. The person may become angry and frustrated with you and themselves because they have lost a grasp of what is happening. They are reacting to their loss of self-control – try to imagine how this must feel. Verbal or physical attacks are not personal – it’s the illness.
You can help to avoid the person to feel secure and less anxious by using the following tips.
- Try to be patient when the person forgets what they just told you and repeats themselves.
- Be tolerant when the person forgets what you have just told them
- Avoid scolding or criticising the person – don’t be angry bacak if they are angry with you, blaming you for their mistakes or for losing their things.
- Be kind and reassuring – show affection in a way that they like
- Call the person by their regular name and respectfully
- Treat the person with courtesy no matter how advanced the dementia.
- Don’t talk over the head of the person with dementia, especially if you are talking about them.
- Involve the person in conversation and listen carefully to the meaning behind their jumbled words
- Try not to correct what the person is saying – the accuracy of the information is not so important as what the person is trying to express.
- If the person needs help with getting washed and dressed do this sensitively – make sure that others cannot see.
- Always talk to the person about what you are going to do and why before you start. Otherwise they will not understand and think you are about to attack them
- Avoid situations in which the person is likely to fail and feel humiliated.
- Look for tasks the person can still do and enjoy – find things you like doing together e.g. singing, cooking, gardening.
- Do things with the person rather than for them. This helps them keep a sense of independence.
- Break down activities into small steps to that the person can manage for themselves
- Remember self-respect is also tied up with our appearance and how we like to look – encourage the person to take a pride in their appearance as they always did.
Know the faces of dementia.
What you need to know about Alzheimer’s disease and related dementias.
People under the age of 65 do not get dementia.
False. Dementia can develop in younger people but is rare. Over the age of 65, dementia affects 1 in 20 people. For people over the age of 80 the number rises to 1 in 6.
Memory loss is the only symptom of dementia.
False. Memory loss is a common early symptom of dementia. However it only becomes an important symptom of dementia when other symptoms also occur such as changes in personality and behavior, loss of sense of time and space, loss of the ability to perform everyday tasks of daily living and problems with language.
Every person is unique and dementia affects people differently. No two people will have symptoms that develop in the exact same way.
Dementia is part of normal ageing.
False. Dementia is not part of normal ageing. Everyone gets a bit more forgetful as they grow older; that does not mean they have dementia.
There is no cure for dementia.
True. There is currently no cure for Alzheimer’s disease or for most other causes of dementia. Nor can a cure be expected in the foreseeable future.
Researchers are still at the stage of developing more drugs that will slow down the progression of the disease, at least in some cases. They still do not know how to prevent the disease from occurring, how to stop its progression or how to reverse its effects. It is hoped that more research into the causes of dementia will eventually make a cure possible.
There are many types of dementia.
True. Dementia is a term used to describe any condition where a variety of different brain functions such as memory, thinking, language, planning and personality deteriorate over time.
There are a large number of different types but the majority of people having Alzheimer’s disease and/or vascular dementia.
Dementia is most common in the richer countries.
False. Dementia is a global problem. 58% of all people with dementia worldwide live in low and middle-income countries. This is expected to rise to 71% by 2050. These high numbers are due to the rapid ageing of populations in these countries.
Once a person is diagnosed with dementia, there is nothing that can be done.
False. Although dementia cannot be cured there is a great deal that can be done to help. The symptoms of memory loss can sometimes be helped by treatment with anti-dementia drugs called cholinesterase inhibitors. Better understanding and management can help associated symptoms such as depression, anxiety, and agitation.
One important reason why people do not go to the doctor with memory problems is that they are ashamed.
True. The stigma that surrounds dementia is a result of a lack of understanding and knowledge. It is important that people understand that a person of worth and dignity, and deserving the same respect as any other human being. Alzheimer associations around the world are working hard to fight the stigma associated with dementia by raising awareness.
There is nowhere to go for advice or help.
False. You are not alone. Many people and organizations, both professional and voluntary, can help. Do not be afraid to ask.
Alzheimer associations offer help and support to people with dementia and their carers. Contact the Alzheimer association in your country. Many associations have telephone helplines, as well as branches or chapters throughout the country. Local groups will know about services in your area. Alzheimer associations will also be able to put you in touch with other caregivers who will understand your worries and problems and will be able to help you.
If one of my parents has dementia I will get it too.
False. If your parent developed dementia in old ae then your chance of developing dementia in old age is slightly greater than a person with no dementia in the family.
There are a few rare cases where Alzheimer’s disease does run in families. In these cases there is a direct link between an inherited mutation in one gene and the onset of the disease. These tend to be cases of ‘early onset’ Alzheimer’s disease, which affects those under the age of 60. In these cases, the probability that close family members (brothers, sisters and children) will develop Alzheimer’s disease is one in two.
Alzheimer’s disease is different from dementia.
False. It is not different. Alzheimer’s disease is a dementia. It is the most common type of dementia.
There is a test to diagnose dementia.
False. There is no specific test. The diagnosis is made by the GP or specialist taking a history both from the person with the symptoms or from a close member of the family or a close friend. The history – together with a physical and mental state examination, memory tests, some blood tests and possibly a brain scan – will normally make it possible to arrive at a diagnosis.
Person-centred care seeks to view the person with dementia as a whole, and considers how the person is influenced by factors beyond the physical changes in the brain. The person centred approach to dementia care focuses on the needs of the service user rather than on the priorities of the service provider. Instead of trying to change people’s behaviour for the benefit of the care setting, a person-centred approach seeks to resolve any difficulties in the interest of the person.
The person-centred approach to care focuses on the individual’s abilities rather than the loss of their abilities. The needs and the emotions of each person are the focal point around which everything else is geared. The person-centred approach seeks to value every person as a unique individual, taking into account their past experiences, their abilities, knowledge, preferences, desires, fears and personality. In other words, the person-centred approach seeks to value the unique personhood of every individual.
The person-centred carer will recognise that some individuals may not be fully able to look after their own well-being, but will seek to provide a positive response that enables the individual to be involved in their care wherever possible by compensating for their losses and building on their strengths and abilities. Finding out about and valuing each person’s talents not skills, and understanding their hopes and fears and what works or does not work for them, will help the carer to provide support and care that is personal to every individual.
This approach also acknowledges what some people may term challenging behaviours as a means of communication. Some people may not be able to express what their needs are or how satisfied they are with the way their needs are being met. Care staff must strive in their attempts to understand the meaning behind the behaviour so as to engage with the individual’s expression of satisfaction or dissatisfaction in how their needs are being met.
HOW TO APPLY PERSON-CENTRED CARE THROUGH MEETING THE PHYSICAL AND SOCIAL NEEDS OF THE PERSON, AT ALL TIMES TREATING INDIVIDUALS WIYH RESPECT AND DIGNITY.
Article 8.1 of the human Right Act  states that: everyone has the right to respect for their private life’’.Within Article8.1 it is expressed that the right to privacy is a qualified right. This means that, unless exceptional circumstances apply, this right must be upheld. The Act applies to and public body, including healthcare services, but does not apply to residential care homes or nursing homes [these are instead governed by the care standards Act 2000].
People who have a form of dementia also have this same fundamental human right. It is never acceptable to overlook this right, even when an individual finds communicating with you difficult.Privacy is crucial to human dignity and independence, and respect for privacy and dignity must be valued at all time.
PRIVACY AND DIGNITY.
Of all the human right, privacy is perhaps the most difficult to define. This is because definition of privacy varies in relation to the context and the environment in which the term is used and so there are therefore many definitions of this term. Privacy has many important aspects in relation to caring for a person with dementia, including:
Maintaining modesty and privacy in relation to personal care.
Keeping personal information [including medical information] confidential.
Privacy of personal space, belongings, and individual boundaries.
The social care institute for Excellence [SCIE] was established improve social care services for adults and children in the . This is achieved by identifying good practice and helping to embed it in everyday social care provision. They work to:
Disseminate knowledge-based good practice guidance.
Involve service users, practitioners, providers and policy makers in advancing and promoting good practice in social care.
Enhance the skills and professionalism of social care workers through tailored, targeted and user-friendly resources.
The social care institute for Excellence [SCIE] have published a practice guide in relation to dignity in care which can be found at:
Despite being a term that is widely used and discussed, the term dignity is quite difficult to define; however, the social care institute and excellence[SCIE] have identified that dignity consists of many overlapping features [including: respect, privacy, autonomy, and self-worth and of a definition of dignity in care as:
The king of care, in any setting, which supports and promotes, and does not undermine, a person’s self-respect, regardless of any difference.
In looking at the meaning of the term dignity, and the four overlapping features already identified, we can see that dignity includes recognition of:
RESPECT- for the person as an individual which is demonstrated through being polite and courteous and taking the time to communicate with the individual.
PRIVACY- including an awareness of the importance of maintaining modesty and privacy when assisting with personal care and maintaining confidentiality in relation to personal information and treatment.
SELFWORTH- the importance of maintaining self esteem, by ensuring that individuals are given choice and are valued in their opinion.
AUTONOMY- including the freedom to make decisions and opportunities are given to enable the person to anticipate in everyday activities.
The department of health are also campaigning to raise awareness of the importance of promoting dignity for older people and the issue of dignity features prominently in the new framework for health and social care services. Further information can be obtained from:
FAILING TO RESPECT DIGNITY.
Although it is difficult to say exactly what privacy and dignity are, it is important to be aware that people are usually aware of when they have not been treated with dignity and respect. As a health care worker you no doubt will strive to maintain a person’s dignity throughout the care process. There may however have been times when an individual’s right to privacy and dignity, may have unknowingly been violated, for example by:
-Failing to close a toilet door when the individual is using the toilet.
-Other staff walking into people’s rooms whilst they are being assisted with intimate personal care.
-Walking into toilets bathrooms or an individual’s bedroom [to check that the person is alright] without knocking.
-Holding a conversation with somebody else whilst assisted a person with their personal care.
-Criticising someone’s eating habits in front of them.
-Using negative labels and phrases.
PERSONAL AND SOCIAL CARE.
Personal care is important to all of us. It affects how we feel about ourselves and it also affects how other people react to us. The impact of dementia on a person’s ability to care for him or herself will vary from one individual to another, and is also likely to change as their condition progresses. A person with a dementia will eventually become less able to take care of their own personal needs and as such they will rely on care staff more and more to help them.
As a carer you may be required to help individuals with their:
-Dressing and undressing.
-Care of feet.
-Care of eyes and ears.
You will also need to provide assistance with:
-Going to the toilet.
-Moving and mobility.
-Eating and drinking.
However, assisting a person with their personal care need is more than merely helping them with their physical needs. It is therefore essential that support is based on the whole person approach to care.
When assisting an individual with their personal care it is essential that careful thought is given to the person who you are assisting in order that you can work out the best way of supporting them, whilst maintaining their privacy and dignity. The emphasis is about seeing the whole person, and not just the task to be completed. Person-centred care involves listening to people [without making assumption] to find out what is most important to them. The person-centred approach to care is holistic, and centres on the whole person, taking into account their feelings, needs, personal preferences and strengths.
It is essential to recognise that all care needs must be tailored to suit each individual and the whole-person approach to care does just that. It places great emphasis on treating every person as an individual, taking into account who they are, their life before, and how they currently feel. Great emphasis is placed on what the person can do, rather than cannot do.
When assisting a person with their personal care, it is essential to have some understanding of how the person may be feeling. Personal care can involve assisting with some very private and intimate tasks [such as bathing, showering and assisting with toileting requirement] and this will inevitably have an effect on the individual, who may experience some or all of the following feelings:
-FEAR- There are many reasons why a person with a dementia may experience fear when being assisted with their personal care needs, including:
-An inability to understand what is happening to them.
-The person may be having hallucinations or delusional thoughts, and may think that you want to harm them.
-The person may be afraid of any associated equipment, such as a hoist or a slide sheet.
The care approach can induce fear, so it is important that you give clear explanations in a way that the individual can understand and that you aim to promote participation and empowerment.
FEELING FORGOTTEN OR ABANDONED- People who have a dementia very often lose their sense of time. So, being left for just a moment can feel like hours to a person with a dementia.
FEELING VIOLATED- For some people, requiring help with personal care means this can be extremely difficult to accept [for example, individuals may have deeply held beliefs about who should touch their body and under what circumstances and so having a care worker help them with their intimate personal care may make them feel dirty and abused]. This where it is essential to have a good idea of a person’s life history, as these feelings can be heightened by a past experience [for example the person may have suffered physical or sexual abuse at some stage in their life]. Because of the dementia, the person may have forgotten that they need assistance with their personal care and may therefore interpret the help as an attack. It essential that you are aware of the types of care that may lead to feelings of violation.
HELPLESSNESS- We all have ways of doing things and some people may have done things the same way for many years. It can feel very uncomfortable for a person who needs support and help when someone comes along and does thing differently. These things may seem trivial to care workers, who may be pressed for time, and is in a position to take over and do the thing quickly and efficiently. But, to the person who is totally dependent on others and have no choice about the way that things are done, this can lead to feelings of helplessness. This may in turn lead to feelings of anger and frustrating of as people become frightened about their loss of control.
LOSS OF IDENTITY- Again, if you take choices away from an individual it can have a great impact upon how they feel about themselves as an individual. Our identity is very important to us and is formed through a combination of who we are, what we wear, our smell and the way we look. All too often within healthcare organisations these choices are taken away from people with a dementia. It is so important to enable individuals to make their own choices wherever possible. Just imagine how it must feel to have someone else choose what you are going to wear.
EMBARRASSMENT AND HUMILIATION- Any person would feel violated, embarrassed and humiliated if they were subject to having to leave the door open when they visit the toilet, or if their naked body was left exposed whilst they were being helped to wash their face. In fact, just the act of having help with personal care can be embarrassing and humiliating for any person, let alone for a person with a dementia [who may also be unable to interpret what is happening].
Through the adoption of a person-centred approach to care, we can begin to have some awareness and understanding of how a person may feel. It is essential that we look at the needs and feelings of the person and reasons for these feelings before we think about the task. If we can begin to understand why the person feels the way they do, we can take steps to help the person to minimise those feelings.
Positive Aspects of Assisting with Personal Care Needs.
In adopting a person-centred approach to the delivery of care, it is essential to take people’s feelings into consideration when assisting them with their personal care needs.
As we can see there are a wide range of emotions that a person with dementia may feel. However, much depends upon how support with personal care is given. Personal care can be a meaningful occasion, for example going to the hairdressers or a health spa for a massage can be a very pleasant and relaxing experience, but if we don’t like the way that we are being treated things can feel uncomfortable and unpleasant. Assisting someone with their personal care needs can give rise to valuable moments for closeness, openness, comfort and connection. If healthcare workers are gentle and supportive, opportunities can be created to speak and share feelings.