Archive for March, 2014

Five Steps To Navigating The Care Maze For Your Elderly Parents

My independent care consultancy Relative Matters, regularly receives calls from potential clients frustrated by the current care system for older people. The extent of the problem was highlighted by recent media attention to the confusion surrounding social care funding and advice, following an investigation undertaken by the consumer watchdog, Which. The organisation asked 30 people across the UK to keep a diary as they tried to organise social care support for their partners, parents or themselves, between November 2013 and January this year.

They identified a number of key themes:

  • People face a maze of confusing advice and information
  • People are sent from pillar to post to find the right support and information
  • Those with the most money (self-funders) all too often struggling to get basic advice
  • Families in distress as they try to make care arrangements
  • Relatives having to complain to get things done

The diaries revealed some people were forced to breaking point when trying  to arrange social care for themselves or a loved one. It was found that the situation was made worse by the lack of relevant information, confusing jargon and some services leaving people to work it out for themselves, resulting in unnecessary distress for families. 

People don’t realise how complex the care system is until they are faced with trying to work their way around it, often at a time of crisis when the older person or their carer become ill or have an accident. People who are not eligible for state funding find it especially difficult to even obtain simple information and advice in some areas, and practical support from a social care professional is minimal or non-existent in most.

Discuss future care early

Most of us hope to maintain our independence in our old age and not need help from anyone else. Sadly this is not always possible and it will be so much easier if you plan for a future that includes care with your elderly parents. Most people avoid the topic until a crisis occurs and then hurried decisions have to be made. So have a conversation as soon as possible with your parents before they need help. Ask them to imagine they need care and support some time in the future. What would be important to them? Would they prefer to be cared for at home, with live in care or in a care home? If their needs are such that they have to move into a care home what would be important to them about the care environment and the way they are cared for?

Make a list of their needs

For my own parents, I put together a list of the information likely to be needed for a professional assessment. This reduced the likelihood of us forgetting important information when speaking to a professional. The list included mental and physical health conditions, communication and mobility issues, daily living challenges, medication, what had changed to make them need care and support, what challenges they faced on their worst day, how they liked to spend their time, the things that were important for giving them a better quality of life, their support network and what concerns or worries they had.

Obtain a professional assessment

Contact your parent’s local authority and ask for the Social Services Department for adults to request an assessment of your parent’s needs. They have to assess anyone who appears to be in need of care whether they are at home or in hospital and regardless of their finances. Make sure the assessment looks at their quality of life and not just personal care needs and ask for a copy.

Financial assessment

The Local Authority should only assess your parents’ financial situation once they have undertaken a needs assessment and agreed the services and support to meet them.

Try and be with your parent when the assessment is undertaken and make sure they have their bank details, savings and investment information, pension and any other income to hand.


Explore options

Once it has been decided what care and support your parent needs and what might be available from the Local Authority you can begin to look at options. This is a very important stage and it is important to consider the whole range of options before a decision is made. For example, if your parent is assessed to need 24 hour support, live in care maybe an option rather than them moving into a care home, special equipment may be helpful to maintain independence and keep support costs down. If your parent is eligible for social care funding, a social worker will help them explore these options but if they have to pay for their own care and support they will have to rely on you to help them.

For more information my recently revised and updated book Relative Matters – The essential guide to finding your way around the care system for older people is available on Amazon. I will also answer any questions you post on Twitter, Facebook or LinkedIn

The Conundrum of Dementia

The last few weeks have presented an unbelievable challenge for my family and I. My mother was diagnosed with dementia over 30 years ago at St Thomas’s hospital in London. At the time the cause of her dementia was not identified. If it was we were never told. Mum also suffered from severe depression and anxiety for many years and had several courses of ECT (Electrical Convulsive Therapy) when I was a child. She also had a number of chronic health conditions that affected her mobility.

Over the past few years my Mother’s memory has progressively deteriorated to the point she was diagnosed with Alzheimer’s disease. However the progression of the disease has been somewhat unusual. Despite being aware that Alzheimer’s disease affects everyone differently, some of the other symptoms that accompany Alzheimer’s have not been present and my family and I do not accept this as the cause of Mum’s dementia.

Recent difficulties have been around Mum’s non-compliant behaviour resulting in staff being unable to manage her mobility and emotional outbursts. These challenges were in contrast with days when she was lucid, eloquent and sensitive with a good recall of recent events. 013_woman_with_carer_optimised[2]

Triggers for emotional outbursts

What triggered her emotional outbursts was not always apparent. A confusing environment with lots of distractions can upset people with dementia, as can situations that test their memory. However, with Mum, she appears to get a misunderstanding or misperception of what was being said or requested stuck in her mind. Other triggers include:

  • Feeling left out, or abandoned
  • Feeling threatened or lost in a world that no longer makes sense
  • Reminders of her lost capacity

When it comes to handling emotional outbursts I have found it vital to calm myself first. People living with dementia are sensitive to our mood and pick up non-verbal tension or anger more so than the content of what we say.

Like many people living with dementia, my mother does not respond well to logic and reason. Much  better to acknowledge that she is upset and assure her you will help her feel better. Also to validate her feelings of loss or fear while not agreeing with her delusions.

The affect of medication for managing behaviour and mood

In my previous post I described how my mother’s condition deteriorated significantly and how the situation was reversed by taking her off most of her medication. In the following post I explain what happened when they did.

The consequences of behavioural challenges

Younger staff found it hard not to take Mum’s attacks or outbursts personally and she often needed three staff to get her washed and dressed as she would not comply with staff requests to support herself.

Eventually her care home said they were unable to manage her any longer and she was assessed for NHS funding and found to be ineligible for even the lower rate. And so we began to search for a care home that could manage Mum’s physical and mobility problems as well as her dementia and behavioral issues.

The difficulty of finding good care

In our area, many homes do not provide person-centered dementia care (an essential requirement in my view) in an environment that is accessible for wheelchairs. This is because they have been converted from large old houses that have different levels, steps and no lift.

A new care environment

Eventually I turned my attention to a home that takes people at the more severe end of their dementia journey and present a challenge to other homes. It is registered for nursing as well as social care, is purpose-built and double the size of the one Mum was moving from.

Due to the nature of the people who live there,  the environment is very different. No matching furniture here, or pretty curtains at the window. No patterned wallpaper or carpet on the floor in the long corridors. We were told people with dementia don’t need these things and what they need a less ‘busy’ care environment to help them feel calm.

However, what they did have was a highly trained and experienced manager who enjoys an excellent reputation and a large team of staff, used to dealing with problem behaviour.

Mum has lived there for a week now and despite our initial concerns, early indications are that she is settling well and responding to the calm approach from staff and peaceful atmosphere prevailing in the home.

The balance between aesthetic environment and skilled care

Some of us have found it difficult to accept the lower standard of care environment. However this is more than balanced by an approach to care and behaviour management that makes Mum feel calm, relaxed and happy. When people are living with dementia we need to accept their current reality and try and see the world (and needs) through their eyes rather than our own.

Of course everyone is different and some places will upset one person and comfort another. Mum’s previous home was excellent but as she continues her dementia journey, her new one appears to offer just what she needs right now. Relaxed, expert and person-centred care.