Thursday 28 November 2013

27 Awareness, Assessment and Diagnosis for Memory Problems - Limbo Time [Update 2 - 13/11/13]


As the population gets older, the numbers with dementia are growing year by year. It is also likely that current life-style choices are  affecting younger citizens who may not otherwise develop to life with a dementia as they reach any decade over say 60. [Although seniors get dementia, younger persons, say 35 years onwards, may get young onset dementia.]    

England has over 300,000 individuals living with dementia which is not diagnosed. Also, many more persons have memory problems which may have dementia-like symptoms. Nationally as a policy it is recognised that early assessment and diagnosis are important. This post addresses issues surrounding this policy. 

 The West Kent CCG has recently issued a document which says that Sevenoaks has 1840 persons with dementia.
 http://www.e-watch.co/articles.php?viewarticle=4359&UID=4272&viaNL

Please note that the reference to Sevenoaks is likely to mean that part of the Sevenoaks District within the West Kent CCG area, ie roughly 100 square km. 

Awareness and Information
The country needs its people to be able to recognise dementia-like symptoms. The reason is that those with undiagnosed dementia will be encouraged to seek assessment and diagnosis. Where dementia is not the cause of the memory problems appropriate treatment for the condition follows, eg depression, drug abuse.

To this end a million volunteers who are being recruited to become Dementia Friends.  They have attended an awareness and information session about life with dementia and will spread this information to others. 

Preparedness of Health and Care Professionals
About 12 years' ago about 50% of doctors would probably be insufficiently trained to deal with assessment of dementia. Five or six years ago 30% of doctors in London would have said the same. By today many more local surgeries have doctors, practitioner nurses, reception staff  who are alerted respond to those with memory problems. More GPs are able to confidently carry out assessments and have the back up specialists in dementia who are based in local memory clinics. 

Specialist clinical training in assessment for dementia has been commissioned by the local Clinical Commissioning Group and given to doctors. Specialist nurses in dementia are being or will be attached to each of two surgeries.

In North West Kent the Alzheimer's and Dementia Support Services (ADSS), a charity, has devised a digital dementia appraisal package for dementia asssessment by doctors who want to use it.  

Limbo Time

As the local rate of assessments rises and and the diagnostic investigations are carried there may be an unfortunate delay - a person with memory problems may have to wait for the the result. 
In some areas the delay - limbo time - is sometimes as long as three months. Given that the national target is to increase diagnoses from about 45% to 66% Clinical Commissing Groups will need to consider any need to increase resources in memory clinics.

Monday 25 November 2013

26 Dementia - Living at Home Alone [Update 1 - 07/12/13]

Living at home alone is often difficult and lonely for a person with dementia.  Life could be easier, safer and more enjoyable if he or she had visitors, help and advice. A better life is much less likely for the many who are not assessed or diagnosed. For the latter changes will often come about after a crisis - a serious illness, an accident, or when other type of emergency arises, eg the person is lost and found by the emergency services. 

From then any assessment will, on referral, be followed by diagnosis of a dementia (if that is the case). As a result in a care pathway is likely to be established. Hopefully, if this is the person's wish this will be at home but his or her destination may well be in a dementia care home.    

Where the diagnosis and appropriate treatment results in life at home changes which could result in adaptations and improvements to make life easier, safer and less stressful. So called assistive technology covers many devices and systems used by local organisations. For instance, the fire and rescue service may fit fire safety equipment. Many homes are fitted with water mist sprinklers - so reducing the impact of a fire caused by the person with dementia not remembering that a cooker is on and a pan catches fire.  

25 Dementia - Planning, Development, and Building for Homes and Care Settings {Update 1 - 09/12/13]

Dementia is at the forefront of the health and social professions policy concerns at the moment. However, this post signposts some of the concerns for entrepreneurs and professionals in property and building industries which will arise from the ever-formulating national strategy for dementia.

In some areas some of the spin-offs from the National Declaration include calls for:

  • increased assessment, diagnosis and treatment of those who may have dementia, say, some 300,000 as yet not so diagnosed
  • emphasis on those living with a dementia residing their home  
  • adaptation of dementia wards and care homes to make them more dementia friendly
  • dementia friendly improvements and changes in residences for a) fire safety, b) falls safety, c) retro-decoration, d) retro-furnishing, and e) assistive tecnology 
  • planning applications for homes, care homes and other care settings suitable for those with dementia.  
Kent County Council are preparing advisory documentation for developments which involve aspects of dementia in project proposals. 

Details are awaited but I would expect the report to include concerns for:
  • housing - both social and private sector developments
  • developments for dementia care settings, eg care homes. 
Also, given the pending growth in neighbourhood planning it might be timely to include advice on making townscapes, green infrastructure, etc more dementia friendly.

Sunday 24 November 2013

22 Dementia - Universities, Colleges and Schools [Update 3 - 24/11/13]

Introduction
Managers, teachers and support staff in each of our universities, colleges and schools may need to develop a vision, objectives and a strategy for:    a)  dementia studies, b)  research, and c)  staffing which embraces the developing national scenarios. 

The concerns and issues now arising with increasing awareness and information are likely to embrace some of the following:
  • distressed students who are falling behind with their studies - a parent or grandparent has demenia
  • distressed employees, governors and others who are caring for a family member living with dementia
  • members of staff or mature students who begin to have memory problems or dementia
  • a local settlement which is developing a policy of becoming a more dementia friendly community
  • pressures from various groups of stakeholders in a particular industry, eg professions, employers and students, which may be facing concerns about dementia
  • many kinds of studies where awareness and information about dementia from research are being drawn into curriculum development and delivery, eg design for dementia friendly care settings, buildings and grey and green environments
  • pressures for monies to be allocated for new dementia-related research questions
  • finally, there may be other like institutions collaborating though their new membership of a Local Dementia Action Alliance.  

Saturday 23 November 2013

24 Inter-generational Activities for those with Dementia - Children and Young Adults [Update 1 - 20/12/13]

Many families, schools, colleges and universities find that their children or students benefit from involvement in appropriately organised:

  • being offered awareness and information session (say 60 minutes) so as to become a dementia friend
  • in-class studies about dementia 
  • learning sessions which involve those living a journey with dementia and /or their carers, eg discussion  
  • leisure or recreation sessions,  
  • researching, reviewing and presenting findings, eg a book review
  • voluntary work. 

Where voluntary work or other inter-actional activities are held the appropriate safeguarding would be needed to protect both students and those with dementia.

As a subject dementia itself might be an appropriate way to develop an understanding, covering: 

  • types 
  • symtoms 
  • stages of life with dementia
  • life-style and other causes
  • assessment, diagnosis, and clinical treatment
  • social and end-of-life care
  • the law of mental capacity 
  • legal safeguards to provide that the wishes of the individual are observed as far as possible. 
Leisure and recreation activities provide opportunities for the likes of:
  • reminiscing 
  • inter-generational transfer of skills
  • activities involving information and communication technology
  • playing games 
  • music and dance 
  • walking and other exercise.
Voluntary work, subject to age and other constraints, might include:
  • assisting in setting up a dementia friendly community or organisation
  • assisting in recreational activities in a care home
  • assisting in event management.
A school, college or university might consider that a team of staff become a Dementia Friend or a  Dementia Friend Champion. This is  as a good beginning to get a measure of dementia awareness and information. 

Any adult whether a Dementia Friend or not might go on to become a Dementia Friend Champion (DFC)Awareness and information  sessions are conducted by a DFC but it is not necessary to be a Dementia Friend before becominga DFC! 

An 18 year old student might also be encouraged to become a DFC, perhaps having become a dementia friend at primary school or later.


Friday 22 November 2013

23 Dementia-related changes in Local Authorities [Update 1 - 23/11/13]

Signposts to possible ways for local authorities to become more dementia friendly  are given in this post. With an expected substantial growth in the numbers of those living with dementia, like France in the early 2000s, a national policy for England is evolved, albeit several years later.  

Elements of these policies are likely to increase the work of local authorities. In particular the following:
      • Dementia friendly communities -  both settlements and organisations, even industries
      • Dementia Friends and Dementia Friends Champions  - residents, business owners, and employees are becoming one of a million “dementia friends”, including “dementia friends champions”.
Local authorities will need develop corporate strategy and objectives to meet the challenge of dementia. Awareness under the national initiatives will increase the rate of diagnoses for greater proportion of those living with dementia, eg from say, 50% to say        66%. If this happens what will the impact be on social care? Dementia friendly communities, dementia friends, carers, and others also induce a need for change.          
          Many departments of local authorities are developing dementia-related policies, including: community safety, highways, planning, public health, revenues, and social care.
         
          Staff induction, training and development opportunities are likely to become more dementia orientated for many in England's local govermnet. They will include: elected members, officers, frontliners, eg meeters and greeters, professionals in departments, and officers in systems which will be available to those with dementia, eg revenues collection.

Tuesday 19 November 2013

12 Dementia - Early Decisions, Documents and Action for End of Life

Although some of us will become vulnerable in some way, the matters listed below probably apply to any of us, fit or otherwise. They are for many very difficult matters to even contemplate. They are listed here as being important for those with memory problems or dementia.  Probably not exhaustive, they include:
  • Will
  • Lasting Power of Attorney for a) property and finance, and  b) health and care 
  • Preferred place for any end of life treatment and care
  • Decisions for refusal of treatment
  • Funeral arrangements 
  • Donations of organs and pacemaker, etc
  • Family records and history for future generations
  • Messages for family members and friends 
  • Decisions about distribution of sentimental items
  • Declutting of papers, records and chattels
  • Trusts and other arrangements for vulnerable members of the family.
Relared posts include Post 12A.

Sunday 17 November 2013

Case Study 1 Kent's Dementia Friendly Communities - Swanley [Update 3 - 28/11/13]

Kent County Council identified 12 priority areas for dementia friendly communities (DFCs). Now we have at least six underway in early stages. Those known to me are Northfleet, Swanley, Westgate, West Malling, Canterbury, Eastry, and Dartford.

The "models" developing are probably different. For instance, in Swanley the approach includes:
  • Several months of desk research into the state of play for Swanley (mainly discovered from internet browsing and local literature searching. This resulted in: a) a draft directory of services, b) a rolling diary of events, c) a raft of governmental visions, policies, projects and  programmes and  d) a sense of the dementia journey, stage by stage.
  • This blog - which identifies many of the items listed above.
  • An invitation to a county-wide meeting convened by KCC's SILK office - which later resulted an intended Swanley DFC being accepted as the third such community in Kent in principle [see Post 1]. 
  • With SILK's guidance and action, a First Community Meeting was convened of residents, community groups, local service providers and others. As a result Swanley DFC was underway.
  • A   baseline evaluation using several questionnaires and other information is now being esatablished.
  • A Panel of Speakers is being created.

At the Second Community Meeting a form of Action Plan was agreed together with a public information and awareness meeting in December.
The intention is that actions should incorporate the stated wishes and needs of those with dementia, their families, and their carers.

Friday 15 November 2013

21A Dementia - Community Groups finding their Way in a Dementia Friendly Community [Update 1 - 17/11/13]

Your community group will have an "agenda" for your particular mission, objectives, and projects and programmes in the locality. Unless specifically involved, your group will probably not have anything to do with dementia or those living with dementia. Nevertheless some of your members may have memory problems and even dementia, but the latter may not yet be assessed or diagnosed by a doctor or specialist.  

Many members of your group may be personally involved or be affected directly by a person living with dementia - it seems that about 40 million individuals in the UK are so affected.  The latter may be family, friend or neighbour  of someone living with dementia. 

Also, all members of your group are likely to meet someone with memory problems or dementia in the wider community - city, town, village, etc. He or she may be a fellow member who has recently been assessed and then diagnosed

If they have not done so already all groups in the community are likely to become aware of the national movement towards dementia friendly communities. How should the your management committee address any local initiative for a dementia friendly community? What needs to be considered in terms of  your group's policies and practices so as to help your community to become more dementia friendly?

Firstly, as individuals you and other group members, particularly committee members might consider the need to get knowledge and insights into the following:
  • An awareness of the difficulties, particularly any stigma, experienced by a person living with dementia
  • An awareness of the different types of dementia and their causes or sources
  • An awareness / recognition of the symptoms of dementia, particularly certain types of dementia
  • A sense of the stages of the life journey of someone living with dementia
  • A recognition that about half those with dementia have not been diagnosed, and many with memory problems may not have dementia  
  • An understanding that life with dementia is not easy but can go on for a long time, with many skills, activities and so on are maintained
  • An understanding that emotions can be retained longer than other facets of life - even say, after recognition and communication has become increasingly difficult. 

Thursday 14 November 2013

20 Dementia in Kent - Facing the Moving Target - Need for Dementia Friendly Communities [Update 2 - 28/11/13]

Kent has been developing or refreshing policies and practices for those with dementia. The number of dementia friendly communities is now six, namely  
  • Westgate
  • Northfleet
  • Swanley - in Sevenoaks District
  • West Malling - in Tunbridge and West Malling District
  • Canterbury
  • Eastry.

Each place is developing in its own manner with with guiding hands of the Project Officer for Dementia Friendly Communities (in the Kent County Council SILK office). What is the nature of the task for Kent?

Diagnosis of those with dementia in Kent is improving and stands at about 30,000. Nevertheless the prevalence of those diagnosed with dementia is less than 50% (but probably higher than 45%). It seems that some individual General Practices have rates of diagnosis as high as 70%. Dartford Gravesham and Swanley Clinical Commissioning Group have, it is understood,  a rate of 51% and a target of 66% by 2015!

Commissioning and developmental policies in the area of the DGS CCG have included:
  • training of GPs (those primary care doctors' surgeries) in assessment of those with memory problems
  • specialist dementia nurses appointed to cover two surgeries in a community
  • application of the NICE dementia protocol
  • shared development of the volunteer Dementia Buddy Scheme at Darent Valley hospital
  • shared development of the upgrading of dementia care settings in hospitals and care homes
  • specialist dementia nurses appointed to liaise with staff at the Ellenor Lions Hospice
  • assessment for memory problems or dementia  of all patients (aged 75 and over) admitted to hospital for at least 72 hours.   
All this suggests that increasing numbers of residents with dementia will be diagnosed, but the target is moving. The natural growth in the the numbers of those in each of the 10 year-cohorts of residents over the age of 65 years means greater numbers of those diagnosed with dementia! The demand for social care, including end-of-life care will increase. One reason for dementia friendly communities lies in this growth "vector".

Those with dementia tend to have relatively more acute injuries and illnesses which arise from the nature of their symptoms. Once in hospital they tend to stay longer and are relatively challenging patients - again because of their symptoms.

Dementia friendly communities might address these issues in several ways:
  • greater friendliness usually means less stress, etc and greater help when those with dementia are out and about in busy streets and business premises
  • greater friendliness usually means everyday transactions are easier to handle for those with dementia
  • greater friendliness usually means more opportunities for leisure and relaxation for carers as well as those with dementia
  • greater friendliness usually means that homes, care settings, other buildings and green and town or village environments are adapted or designed to be helpful to those with dementia.   
Finally, a successful dementia friendly community comes about because residents, visitors, health and social care workers, businesses and others take the trouble to find out what those with dementia:
  • say they need, 
  • say they want to do,
  • say they have decided / chosen X or Y or Z. 

Thursday 7 November 2013

18B Memory Problems and Dementia - Symptoms Update 1 - 28/11/13]

One of the aims of Swanley as a Dementia Friendly Community [see Post 1] is to enhance awareness of dementia, and so support the national policy to increase the rates of diagnoses of dementias. 

The way in which this will be done is to let residents, visitors and those who work in the town know of the symptoms and so encourage those with memory problems or other symptoms to go to their general practitioner (GP), ie a doctor for an assessment.

However, it may be noted that there may be other conditions causing memory problems, eg depression. This Post is a general review of the symptoms that a person living with a dementia may show. [See Post 18 for types of dementia.]

Initial Assessment
Firstly though, you may like to note that a person may exhibit one of these symptoms, eg a problem of memory loss, but that this might be caused by a condition which is not in fact dementia. It is important therefore for the individual to be assessed by a clinical practitioner with relevant training and experience. In some instances the illness will not be dementia. As a result the person may be treated or referred for appropriate treatment after the assessment.

A second aspect of national policy on diagnosis or initial assessment for dementia is that a person over the age of 74 years who is admitted to hospital for 48 hours or more will be assessed routinely for dementia.

Symptoms of Dementia
In life with dementia the various symptoms manivest at different times and may be dormant for long periods. Although there are common symptoms some of those with a particular dementia may not show all of them.

The list which follows is derived from talking to friends at the time when they were early-diagnosed and from written accounts by those who have dementia or by their family members. It is not an attempt to provide clinical  list so what I have called a symptom may be one of the outcomes of an underlying or general symptom.



  1. Loss of short term memory
  2. Confusion
  3. Inappropriate behaviour
  4. Expressions of anger, frustration, etc, eg shouting
  5. Difficulty with or inability to do simple tasks, eg preparing vegetables
  6. Difficulty with reading, eg reading written signage 
  7. Difficulty with numbers, eg dealing with money
  8. Having a propensity to wander and /or becoming lost
  9. Repeatedly asking the same question 
  10. Mild to severe cognitive difficulties
  11. Being unable to recognise faces, eg family members or friends 
  12. Inability to speak or understand
  13. Lack of concentration.
Notes
Note 1 Readers in @Europe, @USA and other places may like to note that in the England most residents and long stay visitors are registered with a general practice doctor (GP) in a local NHS primary care surgery. During opening hours, unless an illness or injury is life-threatening, we will be treated by the GP, dentist, pharmacist, etc. Sometimes we go to a minor injuries unit (MIU) or a walk-in centre.

Note 2 Most of us are encouraged to avoid our local (secondary care) NHS hospital unless:
  • we are referred to a hospital consultant or the hospital's A&E by our GP or an out-of-hours duty doctor
  • we suffer an acute illness or other life threatening injury and emergency paramedics take us to the hospital's Accident and Emergency Unit (A&E), eg by the regional ambulance service, etc
  • we become ill out-of-hours, in which case be bettle off to the A&E.  

17 Lasting Powers of Attorney and Dementia, etc [Update 2 - 20/11/13]

This Post identifies documents where an individual has expressed wishes about a) medical treatment, c) preferred final place for care, d) welfare, e) finance, f) property, e) provision for family members and others following death.

An individual with early onset dementia might need to consider having:

  •  a Will
  • two kinds of Lasting Powers of Attorney these might cover 1) finance and property and  2) clinical and welfare, including long term care
  • an Advance Decision to Refuse Treatment
All the above mentioned will be need to be made whilst the person with dementia has mental capacity to make decisions. They will be important for the patient's GP, hospital doctors and nurses, care home staff and other professionals wishing to take cognisance of the patient's wishes, eg a)  for their treatment, b) where they want to be, and c) their care. You may like to note that, of course, the documents are formal and have nuances of law which affect the way they come into effect.

As an illustration, Swale Clinical Commissioning Group (CCG) in Kent is developing an integrated end of life health and care pathway for those who have a few months to live, say upto 12 months. For those with dementia the period may be longer. The CCG's approach is to provide all professional's in the integrated care pathway to have on-line access to:
  • the patient's wishes as expressed in the legal documents, namely, the lastings power of attorney concerning health and care
  • the planned pathway for integrated care 
  • the ongoing clinical and care records as kept by the professionals on a daily basis.
It is conceivable that where a person living with dementia wishes to remain at home, this will be more readily acheived.

Related posts include: Post 12


Wednesday 6 November 2013

18A Dementia - List of Types of Dementia [Update 4 - 23/12/13]

This morning I was in a village talking to the librarian about dementia to when another member of the public joined in saying: "I don't know the difference between "Alzheimer's" and "Dementia". The three of us then explored the topic very very briefly whilst my books were being processed.

I have not yet worked out the number of dementias or much of the detail but the following list gives some notion of terminology, ie by types and in some instances causes:


  1. Alzheimer's Disease (dementia) - very roughly 60% of those living with a dementia
  2. Vascular dementia - very roughly 30% of those with dementia
  3. Frontotemporal dementia
  4. Pick's disease (dementia)
  5. Dementia with Lewy bodies (Lewy body disease) (see www.lewybody.org )
  6. Hodgekinson's Disease (with dementia)
  7. Parkinson's Disease (with dementia) 
  8. Dementia as a result of brain damage, eg as a result of a motor accident, combat "shell shock" [see Post 33 - re traumatic brain injury TBI]
  9. Dementia as a result of drinking abuse
  10. Dementia as a result of taking drugs abuse
  11. Mix of dementias. 
Needless to say, I am doing some more work to get numbers or proportions to these dementias - so please bear with me. [Several updates will be required! In the meantime Post 18B looks at symptoms.]
In the meantime those who want details might like visit the Azheimer's Society website; http://www.alzheimers.org.uk/

Monday 4 November 2013

16A Assistive Technology for Those with Dementia [Update 2 - 08/11/13]

In an early post I highlighted assistive technology to help those living with dementia. This Post identifies several areas where assistive technology is available. you may like to note that a variety of desciptive terms are sometimes used, eg for online systems or devices  m-heath and tele-health. 

  1. activity monitoring communication systems inter-sourced through laptops, mobile phones, personal computers, TV set-top boxes, etc - usable 24/7 
  2. exit door monitoring, so preventing access to areas to avoid risks of harm 
  3. fire prevention and mitigation
  4. information and communication technology for reminiscing and cognitive skills maintainance
  5. healthcare data communications by wireless technology (tele-health devices)
  6. integrated care and clinical treatment
  7. mobile telephone for tracking or tracing an individual who is carrying a mobile telephone
  8. patient record systems
  9. personal alarms for assistance to a call centre 24/7 
  10. purchasing on-line
  11. signage technology for access, etc.  

 Later material will be added to expand insights into the above and develop other pertinent topics.

You may like to note that assistive technology is likely to become more prominent in health and care in the next few years. Emphasis is being put at presnet by government and industry in reviewing and developing a strategy for assistive technoligy.

Profile 4 Kent County Council - Library Services for Dementia [Update 2 - 10/12/13]

A public library can be an important facility for those living with dementia, and their carers or family. In Kent the Kent County Council Library Service is coming much to the front in the quest for dementia friendly communities. 

In Swanley an event will be held in the town's Library on Tuesday 17 December 2013. It will inter alia publicise a range of materials which may be used to help those with dementia. 

The range of services available is likely to be increased in the foreseeable future. At present they include the following:
  • books and other materials which can be borrowed 
  • eBooks and eAudiobooks for downloading from the Library's website
  • a carer's ticket which allows: a) borrowing more books than usual, b) for a longer period of loan, and b) without fines for missed dates
  • over 20 themed reminiscence boxes (at least 153) to help those with dementia to recall their past - at least 153 boxes containing DVDs, CD, books, posters, toys and the like are available
  • peer support to help the newly diagnosed and others with information and guidance
  • libraries with improved environments - under the Safer Places scheme 
  • working with groups at dementia cafes in the county
  • Talk Time Groups.  
Other actual or potential services include volunteers running:
  • library home delivery and support service
  • Computer Buddy service for on-line activities
  • groups for those who mightbotherwise be isolated.
Reference
KCC Select Committee (2011) Dementia - A new stage in life, (p108) Select Committee Report, KCC County Hall, Maidstone, Kent, UK
Linked Post(s)
Reviw 1 The Dementia Diaries (27/10/130 

Sunday 3 November 2013

No 8C Dementia - Sale etc of Property to Fund Care

A person living with dementia may decide, for example, to remove to another property. This may be a) a smaller property near a family member, b) a larger property with a members of his or her family, or c) a care home. [Sometimes the decision may need to be taken by a relative or carer who has enduring power of attorney, ie on behalf of the person with dementia who is no longer able to take such decisions as may be necessary.]

A need will be for funds to enable the move to be made. A list of some possible sources is given in Post 8B. If the person with dementia has sufficient investments, the disposal of these, subject to any capital gains or other taxes may provide sufficent funds.

Sale of Home
The sale of the individual's home may need to be carried out. If it is his or her sole or main residence that is sold, no capital gains tax should arise.

The amount available for the later move will be: the gross price agreed less a)  estate agent's costs and fees, b) solicitor's costs and fees, and c) removal costs.

Letting of Home
If the person with dementia is moving to a care home, an alternative to a sale might be letting the home for a regular rent to meet or partly meet the care home fees.

Again taxation needs to be considered - since only the net income from the let property will be available. Once let, the net income less annual costs will be subject to income tax. For tax purposes the annual costs allowed against annual gross rents include property insurance, maintenance, repairs, management fees, and other allowable costs. Before letting it amy be appropriate to repair and improve the property so that it can be let. Also, the letting agent's costs and fees need to be considered.

Thus, the net of tax income will be available to help pay for care home costs, etc.