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. 

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

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/

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 

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.