All posts tagged living with dementia

The Importance of Mental Stimulation for People with Dementia

This guest post provides information about activities, games and excercises that provide stimulation for people living with dementia

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Top Tips For Visiting Someone Living With Dementia

Dementia covers a group of symptoms such as memory problems, decreasing ability to think or reason and difficulty communicating.

People with Dementia often find it hard to let you know how they feel. They often become confused, anxious and sometimes frightened.  Finding it hard to recognise people.  However, feelings remain and visits can stimulate warm feelings and be comforting.

Here are some things you can do to help when you visit someone with Dementia

  • Wear something bright and colourful and approach them from the front, don’t be tempted to tap them on the shoulder or approach them from behind.
  •  Introduce yourself with an explanation of who you are
  •  Smile and make eye contact, sitting down next to them at their level
  • Touch their hand or arm gently if appropriate
  • Make sure you speak simply, one comment at a time
  • Listen and give them time to answer or comment.  Be patient.
  • It is important to be positive and reassuring.
  • Try to avoid questions or choices, try ‘A cup of tea?’ (not, tea or coffee?) Be Patient.
  • Accept incorrect statements as they may be caused by memory loss or faulty logic. Acknowledge the emotions behind the words.

I find these tips very helpful. They were based on work undertaken by Dr. Jennifer Bute a retired GP who is living with early onset Alzheimer’s Dementia.

 

Top Tips For Choosing a Care Home For People Living With Dementia

 I have covered the subject of choosing a care home before but get asked about it so often I thought I would cover it again and aim it specifically for people living with dementia so as to draw on my own experience of choosing a care home for my mother.

Moving into their final home is a life-changing event for your elderly loved one and paying for long-term care is the second greatest investment a person will make in their life after a mortgage. Make sure you get independent, specialist financial advice and spend the necessary time to match their needs, expectations, uniqueness and life style to your ultimate choice. Alternativey get a professional like Relative Matters to help you.

 

Local Authority Funding   

To be eligible, a person needs less than £23,500 in savings/assets including their home and a significant or critical level of needs

If you and the Council agree your loved one needs to go into a care home, they must arrange it if the person can’t do it themselves and no-one is willing or able to act for them. This applies whoever is paying.

Your loved one has a right to a place in a care home ‘that meets their needs’, as specified in their written assessment, even if it is in a different county.

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  • You can get a list of care homes in the area your loved one wants to live by contacting their Local Authority Social Services Department, or the one in the area they want to live
  • Make a list of the homes that 1) are in the desired area 2) are the type of care home you are looking for (dementia or dementia with nursing)
  • Check selected homes are meeting national care standards. You can do this by going to the Care Quality Commission (CQC) website click on ‘care homes’ and enter name of the home.
  • Complete a care home profile with your loved one that sets out what is important to and for them. If they are unable to contribute themselves, ask people who know them well or put yourself in their position and choose for them.
  • Make appointments to view the homes, with your loved one if possible. A glossy brochure is no substitute for a visit! Only show them two at a time or you will confuse them.
  • Make a list of the key questions you want to ask when you visit care homes. Age UK offer a  checklist to help with this and provide other useful information about choosing a care home.
  • Your attention and questions should relate to the care home profile you have developed for and with your loved one. Here are a few questions I asked when researching a home for my mother.
  • Can you give an example of how you retain a person’s sense of identity and self worth?
  • How is dignity and respect embedded in practice?
  • How do you meet the communication needs of people with dementia? (I was looking for things like “maintaining a calm environment, reinforcing the need to approach people in a calm sensitive way, treating people with dignity and respect etc.
  • How do you manage difficult behaviour? I was looking for an answer that goes something like “There is always a reason and we try to find out what it is and seek help from other professionals when necessary” etc.
  • Does the home have Wi-Fi? (Needed for Mum’s iPad)
  • What training is in place for staff about dementia? I was looking for a regular training programme that included relationship-based memory care, which uses a compassionate, innovative, respectful method of dementia care that keeps clients calm and staff members engaged.
  • What is your policy for end of life care? Do residents have to move to hospital or a hospice? Are you linked to a palliative care or end of life team?
  • If your loved one has to fund their own care, ask what would happen if their money runs out after a year or so. Would the home be prepared to accept the council’s standard weekly rate?
  • Remember who you are choosing the home for and look at things from their perspective

The Secret To Finding The Right Care Home For Your Elderly Relative

Finding the right care home for an elderly loved one can be time consuming, stressful and overwhelming. Where do you begin when presented with a long list of care homes in their area? How will you know which one is best for them?

The secret

  • The secret is that you need to personalise your research by using personal selection criteria. Here are some of the things you need to think about:
  • What geographical area do they want to live in?
  • What kind of care home do they need? A residential home, a care home with nursing or a specialist home for people living with dementia?
  • What budget do they have? If your relative is being funded by the local authority, they will have a limit to the amount they will pay so find this out before you begin your search

What is important to and for your relative? 009_old_woman_smiling_optimised[2]

When looking for a care home for my clients, I begin with the question, ‘What is important to you about living in a care home?’ If they are unable to answer for themselves, I ask the people who know them best. Sometimes they need a little help so I prompt them. These are a few of the things I have been asked to include in a care home search.

Having a nice garden, being pet friendly, having a nice view from the window, WiFi access, living near family, access to public transport, being part of a small group, having people to talk to, having plenty to do, being treated with dignity and respect, feeling in control, not having to move again if condition deteriorates, ensuite facilities, being able to take my own bed and chair, having breakfast in bed, be near church, male as well as female staff, somewhere quiet to meditate etc.

Then I find out what is important for them. For example, level access, staff trained in managing dementia, access to trained health professionals, cater for special diet, staff trained in end of life care, meets National care standards etc.

See things from your relative’s perspective

When looking for a care home, it is important to try and see things from the person’s perspective rather than your own.

For example when we had to find a new care home for my mother who is living with dementia, it was more important to find a home that would be able to manage her difficult behavioural and mental health issues than one having nice furniture, matching bedding and ensuite facilities. We initially found it difficult to visualise Mum in a home where the decor and furniture didn’t match and there was an expectation that she would be brought to the dining room for breakfast (she had been enjoying breakfast in bed for over 10 years) and have to sit in the lounge or conservatory with others all day. In her previous care home she had refused to move from her room where she stayed all day every day.

We soon realised our fears were unfounded. Mum has responded magnificently to the calm atmosphere and gentle, confident approach from staff. The staff team who are multicultural and dress in their own individual way, treat our Mother with dignity and respect and always have a warm smile for us when we visit. She is also oblivious to the functional and uncoordinated decor, furniture and equipment, despite these things having been important to her in the past.

Lessons to be learned

There are lesson to be learned here. Firstly, don’t assume that your mother or father will find the same things important to them as they did in the past, as like my mother this might not be the case. Secondly  routine and a calm atmosphere are important for people living with dementia.

Another example of a personal approach to finding the right care home is one of my recent clients. Something that was important to her was that the room was big enough to accommodate her double bed and bedroom furniture, the home was plush as she was leaving a large luxury apartment and there were regular social functions and people she could talk to as she craved company.

Good luck with your search and remember , the secret is to find the right home for your loved one rather than yourself.

The Consequences of Reviewing Medication

In my previous post, The Cost of Failing to Review Medication I talked about the dangers and consequences of not reviewing medication for older people living with dementia. In this post I want to highlight the consequences of withdrawing long term medication for depression, Alzheimer’s and behavioural challenges without a proper plan in place to manage withdrawal. Medical Drugs for Pharmacy Health Shop of Medicine

The effects of withdrawing my mother’s medication

Following the review of Mum’s medication the drugs were withdrawn and have finally left her system. Before long her behavioural challenges returned with a vengeance and she has become distressed. Mum has suffered from depression and severe anxiety for most of her adult life and her dementia which began over 30 years ago became more complex a few years ago. She therefore been taking a cocktail of strong and powerful medication, some for many years. Since the withdrawal of medication that was making her feel sick, confused, disconnected, unable to speak and floppy, Mum has become very anxious and presenting angry outbursts, paranoia, hallucinations. This causes her immense frustration and sadness which is typical of older people living with dementia in residential care homes who have experienced so much loss and change.

Loss and lack of insight

Older people people living with dementia moving into care homes have lost their homes which have been condensed into one room, often their partners, local community connections, control over many aspects of their life, and to their families and close friends, their personalities. Mum also remains convinced that there is nothing wrong with her mentally, constantly reminding us that she is still an intelligent woman. Like most people living with dementia, she has no insight into her own abilities.

Getting it right

Getting the medication right for a person with Dementia is a complex issue that requires trial and error and a lot of time. In the meantime staff at the residential home are having to manage my mother with all her behavioural difficulties and withdrawal symptoms from the years that she has been on, what are very powerful drugs. Unfortunately, whereas people addicted to heroine would have a structured programme of support and carefully monitored medication to manage their withdrawal, older people like Mum are often left to go ‘cold turkey’!

Time is needed

It becomes very difficult to watch someone you love needing urgent medical attention, as health professionals are vastly overstretched and arranging appointments for them to see Mum takes time. Advocacy, kindness and compassion

Unfortunately the situation will not be resolved immediately and there are likely to be many hurdles to overcome before the dose of Mum’s medication has been adjusted correctly. Unfortunately older people living with dementia just aren’t treated with the same priority as younger adults. We can only support our elderly loved ones, advocate on their behalf and support them with the kindness and compassion they deserve. I would love to hear from anyone who has experienced similar problems with medication for an older person living with dementia.

Dementia Is Everyone's Business

Following the recent attention on dementia and the G8 Dementia Summit (check out my blog The G8 Dementia Summit – A Missed Opportunity) I have been reflecting on my short time as a Dementia Champion for the Dementia Friends Initiative.

Increasing prevalence of dementia

There are now over 800,000 people living with dementia in the UK and this will triple over the next 30 years. One of the most worrying statistics is that 1 in 3 of us will get dementia at some stage in our life and the rest will feel its impact from a friend, relative or someone they know who is living with dementia.

The UK is not alone. Dementia has become a worldwide problem and there has been a growing number of towns, cities and communities worldwide striving to better meet the needs of their older residents living with dementia.

Lack of awareness, fear, stigma and misunderstanding

I have found a lack of understanding about dementia and resistance to find out more about it with a slow take up of the one hour free information sessions I offer as a Dementia Champion.

I think this is because people are scared of dementia, which has replaced cancer as the disease that people fear most. This fear is fuelled by stigma and misunderstanding as well as the misguided perception that it ‘won’t happen to me’.

Unfortunately, dementia will not go away if we ignore it and I am on a mission to empower people about dementia and play a role in helping communities understand dementia so they can become more inclusive for the increasing number of people living with dementia. old-people-beauty-care

A personal and professional interest in dementia

My interest and passion for dementia comes from my mother who has lived with dementia for many years and the fact that 80% of my elderly clients are living with dementia too.

About Dementia Friends

As the brain gradually shuts down people with dementia sometimes need a helping hand to go about their daily lives and feel included in the local community.

Dementia Friends is about giving more people an understanding of dementia and the small things that could make a difference to people living in their local community.

The initiative is funded by the Department of Health and the Cabinet Office and championed by the Prime Minister

Dementia Friends is one part of Alzheimer’s Society’s work to create more dementia friendly communities – places that are more understanding and welcoming of people living with dementia. Their target is to recruit one million Dementia Friends by 2015.

Dementia friendly communities

The “dementia friendly communities” programme focuses on improving the inclusion and quality of life of people with dementia.  In these communities:

  • people will be aware of and understand more about dementia;
  • people with dementia and their carers will be encouraged to seek help and support;
  • people with dementia will feel included in their community, be more independent and have more choice and control over their lives.

And it’s great publicity for businesses that sign up. The Prime Minister’s challenge on dementia  includes an ambition to create communities that are working to help people live well with dementia. With the right attitude and approach people certainly can live well with dementia.

It will be a challenge to make our communities dementia friendly and neighbours, families, friends, companies, shops, taxi firms, banks, GP surgeries, dentists, professionals, hairdressers and other service providers need to become involved.

In a dementia friendly community:

  • people will be, aware of and understand more about dementia
  • people with dementia and their carers will be encouraged to seek help and support
  • people with dementia will feel included in their community, be more independent and have more choice and control over their lives

Publicity

And it’s great publicity for businesses that staff sign up to becoming Dementia Friends.

Living well with dementia

With the right attitude and understanding people can live well with dementia and we all need to accept social responsibility and play our part in making it happen.

Dementia should be everyone’s concern not just the government’s. Becoming a Dementia Friend will help you become informed and play your part so check out the Dementia Friends website now. Alternatively contact me via my website Relative Matters and I will be happy to help you.

The time to act is now

Old age is not about ‘them’ it is about all of us and dementia will touch all our lives directly or indirectly. The time to act is now and I urge you as an individual/business to open your hearts and minds and become a Dementia Friend.

Living With Dementia – How to Create A Life Story Book

Memories are precious especially for people living with dementia who use past experiences to make sense of their present reality. A Life Story Book will enable you to validate their life. Part of being a person is having your self-worth acknowledged and to feel that you matter. A Life Story Book can also be used to distract attention if the person is feeling anxious or upset.

It couldn’t be easier to produce a Life Story Book. Just gather your loved one’s photos and documents and put them in chronological order in a scrapbook or photo album. It’s a great activity to do with them and I suggest you put simple descriptions on each page.

The power of an image to engage a person with dementia lies, not only in the visual aspect of the image, but also in the following:Untitled

  •    Showing positive emotions such as joy and happiness
  •   A strong sense of narrative that encourages story telling
  •   An element of humour that does not require sophisticated interpretation

You should avoid images that include anything that could be upsetting for someone with dementia such as people in an aggressive or distressed state, or showing people or animals at risk. These can lead to feelings of anxiety or distress that people with dementia may be unable to rationalise.

If you want to go the whole hog  there is a great on-line system that makes it easy and fun to take a treasure hunt through their memories and store them in a beautiful book that becomes a family heirloom. There are written prompts on every web page to conjure up the fashion, sport and news of that time in their life.

What a lovely birthday or Christmas present a life story book would make for an elderly relative!

Living With Dementia – Ten Top Tips For Carers

Do you have an elderly relative living with dementia? It is likely that you do because 1 in 3 of us will know someone with dementia.

My own experience is informed by working for Social Services and the NHS for many years and supporting people living with dementia in my elderly care consultancy. My mother was also diagnosed with dementia over 20 years ago so I understand personally, the devastating effect it can have on an individual and family life. Here are my top tips based on that experience.

Get into the right frame of mind

Breathe deeply, centre yourself, imagine what it would be like to step into the person with dementia’s shoes and enter their world.

Give them your attention

People with dementia need the same opportunities as everyone else to share their worries, feelings and views. Part of being a person is being acknowledged. Observe, imagine and associate with what the person is feeling in your heart.

Allow plenty of time

Managing services for a local authority, struggling to find enough money to meet ever increasing demands with a diminishing budget, we had to focus on a task orientated ‘time and task’ approach which put pressure on staff and often left clients feeling bewildered. You need to allow time for the person to process information as they will become anxious if they are rushed.

Find out about them

I cannot stress enough how important it is to understand an individual’s background in order to deliver person- centred care. Every person living with dementia will have personal attributes, strengths, skills, hobbies and interests, work and life experiences. You need to find out what they are to build up a personal profile so care can be consistent and personalised.

Give the gift of ‘presence’

By this I mean simply be with the person and listen to their feelings and concerns in a non-judgmental way.

Show that you are listening

Get into the moment, respond from your heart and rephrase what they are saying to show that you are listening and that you empathise with them.

Tune into their feelings and emotions rather than what they are saying

Match their tone and say something like  “You are feeling upset. It feels scary when things are changing doesn’t it?” (or whatever you think may really be troubling them)

Use photographs to create a life story book and a memory box with their personal memorabilia MH900341736

People living with dementia use past experiences to make sense of their current reality and these tools will enable you to validate the person’s life. A Life Story Book is really easy to make and you can find out here.

You can also use a a photograph album, life story book or memory box to distract attention if the person is feeling anxious or upset.

Shift their mood when you need to

Connect them with happy memories. “Can you remember a time when you were happy? Lets have a look at some photos to jog your memory”

Use new technology to help manage their care

New technology brings new devices and tools that can help to  reduce anxiety, maintain independence, reduce care costs and create a less oppressive care environment. Just a few of the things I got my mother when she lived at home are a light that stuck over the bed with a motion sensor so it came on when she got up at night that I bought from Wilkinsons, a day clock that just tells the day and time of day and  and a nifty gadget called a wander minder that I used to remind her to turn the tap off on her catheter after she had emptied it. iPads are also great for people living with dementia. Here are some posts where I have written about them. Ten Reasons Why iPads are Magic for Older PeopleTen Smart Apps for Older People To Use On Their iPad- Part One, Ten Smart Apps For Older People To Use On Their iPad- Part TwoThe Arrival of An iPadDigital Technology, Social Care and Older People

There are always new things coming into the marketplace so keep a look out on my shop which is currently being developed. The following sites are also useful to keep your eye on shops at  MyAgeing Parent and Alzheimer’s Society

Look after yourself

Whether you are caring for an elderly relative yourself, managing their care  or working with people living with dementia it can be exhausting and very stressful. Make sure you have someone to talk to, have regular breaks and ask for help if you need it.

 

Day Clock for People With Dementia

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Click image to view on Amazon


For anyone with dementia who becomes confused remembering what day of the week it is, or whether it is morning afternoon, evening or night time, look no further. This clock is absolutely ideal. It is delightfully simple and  provides reassurance which helps everyone  (not just those living with dementia)  I have suggested it to several people who have relatives living with dementia and they have all been thrilled, although some did comment on the high cost. We have just bought one for our Mother’s birthday. As you know my mother has dementia and lives in a care home.

We had sorted out her visits and appointments by attaching a large whiteboard to the wall in her room (with the Managers permission of course)  and used a permanent marker  to rule out the days of the week and we list what is happening during the coming week each Sunday with a dry marker.  Staff are always commenting on how useful it is but Mum struggled because she didn’t know what day of the week it was. This little gem will keep her orientated beautifully.

I have always explained to Mum that dementia is jargon for having memory problems but I know the word upsets some people, as does the word Alzheimer’s disease. If your elderly loved one is likely to be upset, you might want to put it in another box.

Although it certainly isn’t cheap, I think the peace of mind it brings makes it a good investment.