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FAQs
In what way are you different from the Alzheimer’s Society?
What is the difference between dementia and Alzheimer’s disease?
Some people do not like the word ‘dementia’. Knowing this why do you call your charity Dementia Care Partnership?
We hear that you provide a selection of services to support people with dementia to stay in their own homes. How do you do this?
Can anyone access your services?
What is the difference between the Independent Supported Living Houses (ISLH) and residential care?
People with dementia need more space and corridors to pace, don’t they? How can they live in ordinary houses as their dementia progresses?
Your brochures refer to the Independent Supported Living Houses as ‘home for life’. Surely it must be impossible to achieve. Should you not say ‘home for life where ever possible?’
My mother has dementia but cannot understand English. She speaks Punjabi. I could do with a rest and want to use your overnight short break service. What help can you offer her?
What do you mean by day activities/opportunities?
Why do people with dementia ask questions without ever remembering the answer?
Am I the only carer who gets impatient with my father who has dementia?
My wife talks about wanting to go home. I don’t understand this as she is at home. Can you explain this?
In what way are you different from the Alzheimer’s Society?
Alzheimer’s Society is a national organisation with local branches across the country. They are a campaigning, research, and in some areas, service provider organisation. DCP is a local organisation set up by carers who felt angry and frustrated at the gaps in services to help them look after their relatives at home. Their passion and determination led to the birth of DCP to develop and deliver services to fill the gaps they identified.
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What is the difference between dementia and Alzheimer’s disease?
Dementia is not a disease in itself but is a word used to describe a group of symptoms that can be caused by a number of illnesses that affect the brain. One thing they all have in common is a progressive loss of brain function. However, dementia affects different people differently. People with dementia may have significantly impaired intellectual functioning that interferes with their day to day normal activities and relationships. They may lose their problem solving skills, ability to control their emotions, and they may experience personality changes and behavioral problems such as agitation, delusions, and hallucinations.
Although memory loss is a common symptom of dementia, memory loss by itself does not mean that a person has dementia.
There are many different types of illnesses which can cause symptoms of dementia, the most common ones are Alzheimer’s disease, vascular dementia (stroke related) and dementia with Lewy bodies. Others are frontal lobe dementia, Huntington’s disease, Downs Syndrome and Creutzfeldt-Jakob disease. In addition, conditions that can cause dementia or dementia-like symptoms include reactions to medications, metabolic problems and endocrine abnormalities, nutritional deficiencies, infections, poisoning, brain tumors, anoxia or hypoxia (conditions in which the brain’s oxygen supply is either reduced or cut off entirely), and heart and lung problems.
Although Dementia is common in very older people, dementia is not a normal part of the ageing process.
At DCP we recognise that dementia affects different people differently and try to understand that sometimes their ‘behaviour problems’ are their way of expressing their fears, anxieties, frustrations, anger as well as threats and losses in their lives.
We believe a medical model of practice tends to emphasise the progressive nature of dementia – such as Deterioration, Difficult behaviour and Dependency. We therefore strive to adopt a psycho social model - which sees people with dementia as unique individuals with needs no different from our own.
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Some people do not like the word ‘dementia’. Knowing this why do you call your charity Dementia Care Partnership?
In the past dementia was referred to as ‘senile dementia’ or ‘loss of mind’ and the view was that people with dementia should be in locked residential homes. However, a number of public figures developing dementia (President Regan, Iris Murdoch etc) helped to raise more awareness and understanding about the illness. In addition we felt that as a charity, founded directly as a result of the personal experiences of people with dementia and their carers, we have an educational role to play in raising awareness about the needs of people with dementia. Their needs are no different to anyone elses and they have the right to contribute and live as part of their own communities taking their rightful place in society.
Removing the word dementia only reinforces the view that it should be ‘hidden’.
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We hear that you provide a selection of services to support people with dementia to stay in their own homes. How do you do this?
When we set up the Charity in the early nineties, the only choices people with dementia and their carers faced were either care provided in the individual’s own home or in a residential home. DCP recognised that in order for someone to be supported in their own home there has to be more choice in services. DCP set up services such as home support, day activities/opportunities, independent supported living houses and short break services as alternatives to residential care.
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Can anyone access your services?
Yes, our services can be accessed/purchased directly or via health or social services.
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What is the difference between the Independent Supported Living Houses (ISLH) and residential care?
When a person with dementia is ‘admitted’ into a residential home or a nursing home, they often find themselves having to give up their house. Moving into an ISLH is not different from moving into a new home. The person with dementia is thus re-housed with a tenancy agreement and tenancy rights. They, with their family, as appropriate, retain control over their finances. DCP support workers are available to provide twenty four hour care.
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People with dementia need more space and corridors to pace, don’t they? How can they live in ordinary houses as their dementia progresses?
We believe it is not the housing environment that is important but the care and support provided within it. Our support workers are trained to be tuned into, and be sensitive, to the needs, views and emotions of their tenants. The continuous caring relationship results in preventing behaviour problems. The creation of a family home atmosphere, a design which incorporates visual access, offers reassurance and emotional security, and takes away the need to ‘pace’. At DCP we believe if a person with dementia is restless or ‘pacing’, they are seeking their ‘attachment figures’/loved ones or have a purpose in mind.
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Your brochures refer to the Independent Supported Living Houses as ‘home for life’. Surely it must be impossible to achieve. Should you not say ‘home for life where ever possible?’
We pioneered Independent Supported Living Houses (ISLH) for people with dementia, because of people’s experience of being moved as ‘parcels’ from a residential home to a nursing home or into a hospital bed. We wanted to avoid this. So when we set up the first ISLH house we stated that ‘we would remain committed to offering a home for life’ for those re-housed’. We believed that adding phrases like ‘where ever possible’, takes away real commitment to supporting someone at home until they die. We learned by working in close partnership with the primary care teams local to where the houses are we can achieve out commitment.
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My mother has dementia but cannot understand English. She speaks Punjabi. I could do with a rest and want to use your overnight short break service. What help can you offer her?
We would want to come and meet with you and your mother and would introduce one of our Punjabi speaking support workers to her. If you are concerned about leaving her alone, we have facilities for a family member to stay with her.
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What do you mean by day activities/opportunities?
We believe irrespective of illness or disability, given the right environment and opportunities every individual has a positive contribution to make. We learned by asking our clients how they wanted to spend their day with us. Some chose activities or hobbies that they have always been interested in such as gardening, golf, watercolours, dancing etc. For others we created opportunities such as learning new skills, for example, computing, horse riding, etc. It also provided the opportunity to make new friendships.
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Why do people with dementia ask questions without ever remembering the answer?
Sometimes people with dementia find it difficult to verbalise their anxieties or insecurities in the same way we do. Usually if a person with dementia is repeating a question it may be that they are worried or anxious about something and seeking reassurance. Living with a memory loss can be frightening because of losing control and losing one’s self/identity. What would help is to understand what is causing the worry and anxiety. For instance, a repeated question such as “when will my husband be home?” could be interpreted and understood as “I feel insecure, I am anxious about being separated from my loved one, I need reassurance that he hasn’t left me.”
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Am I the only carer who gets impatient with my father who has dementia?
Caring for a person with dementia can be very stressful. Family members who become the ‘carers’ often do not know that their role has changed. The role reversal from mother-daughter, husband-wife is the most distressing. Sometimes we don’t even know when we become carers; we realise this when we want to turn to our mothers or fathers for advice or help and they are not there for us anymore. The husband who was once the best friend and companion is no longer there. This loss is difficult for a carer who feels the caring role as a ‘burden’ and the cared-for does not want to be a burden. When we carry all these emotions, tempers are bound to flare up and we are bound to lose our patience. After all we are only human. It is important to find ways to ‘escape’ which are very individual to you; a walk around the garden, a phone call to a friend, some soothing music; these have all been recommended but everyone is different. Try to find your own ‘de-stress medicine’. If you are really not coping on a daily basis you need to speak to your loved-one’s social worker and share your problems, or talk to your GP about your own health.
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My wife talks about wanting to go home. I don’t understand this as she is at home. Can you explain this?
This is another example of trying to look behind the words of the question. ‘Home’ conjures up an image of safety, warmth, love, emotional security and familiarity. Sometimes if your wife is talking about ‘home’ she may be remembering her home she was born and brought up in where she felt secure. We learned this when we observed people with dementia who were reported as ‘missing’ had travelled to the places where they spent their childhood with their parents. This question could be another way of seeking reassurance. It could be a desire to feel the security she once felt before she had dementia. Gently sitting down with photographs explaining ‘this is where you were born and lived with your parents, but this is where we have been living, this is me, this is when we got married, these are our children etc sometimes help to reassure and gently re-orientate them. With some people we found that taking them for a walk around the area and returning home with a ‘isn’t it lovely to be home again’ was sufficient.
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