Early Onset Dementia Alberta (EODA)
October 25, 2014 Conference
Red Deer, Alberta
For the purposes of clarity and consistency, individuals who have dementia (whatever their age, gender or specific dementia diagnosis) are herein referred to as “Care Partners.” Those who provide support and care to loved Care Partners are referred to as “Care Givers,” and individuals paid to provide care and services to our Care Partners are referred to as “Care Workers.”
- The issues identified on the agenda were: differences in application from region to region, issues with the needs assessments and who may provide AHS supported care. Some regions in the province excel in the provision of Home Care support. How can we get other jurisdictions to follow the same best practices?
- We see a huge need for better dementia training for direct Care Workers, but also for the individuals assessing our Care Partners for their eligibility and services. Discussion did not yield any specific strategies for addressing the inequalities between regions.
- There are clearly issues with HOW individuals are assessed for the various homecare programs.
- The ‘assessment tools’ used by homecare are based on medical models, and are blunt at best. When an individual has undergone detailed neuropsych testing in the course of diagnosis, to then base their entire care program on a simple “mini-mental” is inappropriate.
- Care Givers were encouraged to obtain copies of all assessment reports (from physicians, neuro-psychologists, MRI or CT scans, etc.) and compile them in a folder or binder. Bring the collection to each new assessment situation so that all the available testing and report data to that point is present for consideration. Every individual has a right to copies of all and any reports, letters or assessments that pertain to them; ASK for copies... and persist if need be.
- Medical model tools are not appropriate for individuals who don’t need medical or nursing care but who need to be assessed for home care support in the form of supervision, cuing, activities and companionship.
- The Care Workers applying the assessment tools need to be better educated in how early-onset dementia-related issues differ from those in elderly individuals with dementia.
- Better training for Care Workers (Aides, RNs, LPN, Rec. Therapists, etc.) might include a certificate program for specialized training in care of dementia clients.
- The mindset and the language needs to change from ‘patients’ to ‘clients,’ to de-emphasize the medical/nursing care approach and attitude. Person-centered care doesn’t exist without remembering that the client is a person.
- AHS denies access to a huge pool of caring and connected Care Workers when they deny family members and relatives to be paid as Care Givers. Given the clear shortage of available educated and motivated Care Workers – particularly those willing to work the hours needed to accommodate full-time working Care Partners - the financially driven position (“too much opportunity for abuse of the program”) is indefensible.
- Care Workers need to be paid a living wage. Poor pay influences the pool of available Care Workers and so becomes associated with issues like:
- Many care workers have English as a second language and so speak with accents that create additional challenges for our Care Partners, many of whom are already compromised in their ability to understand spoken communication.
- ESL is associated with cultural differences such as judgemental views on having non-family look after our Care Partners and removing them from their/our homes. Care Givers report encountering negative attitudes implying that Care Givers who place their loved ones in facilities are uncaring and unwilling to look after them themselves.
- Not understanding dementia and its various manifestations leads to things like the Care Workers who saw one Care Partner speaking to himself in the mirror and were convinced he was possessed of the devil!
- Some way must be found that allows Care Workers from Homecare to transport our Care Partners so that they are able to participate in activities outside the home and not restrict them to just what is available within moderate walking distance.
LACK OF SERVICES/PROGRAMMING
- The issues identified on the agenda were: the lack or insufficiency of programming specific to EOD; the need or fulltime, age appropriate, community-based support; the advantages of utilizing existing organizations (like seniors’ and community centres) to keep our Care Partners actively involved in their communities.
- The issues with current EOD programming seems to be that they currently aren’t but need to be:
- Run at hours that accommodate full-time working Care Givers (usually spouses), 8am-5pm.
- Be more activity-focussed in response to the younger age and relative healthiness of our Care Partners.
- Be accessible BEFORE the Care Partner’s support network ends up in crisis!
- Accommodating of the fact that the Care Partners are part of a FAMILY and that the entire family needs support, not the care Partner in isolation. E.G. When the Care Giver works full time and/or there are children still in the home, things as basic as meal preparation should reflect that reality.
- Age and stage appropriate in practical acknowledgement of the reality that EOD is a progressive disease and that someone in the early-onset phase needs very different supports than someone in the final stages of the disease.
- Find a way to let clients in Self-Managed Care access any of the adult day programs that are available to clients in Homecare.
- There are many community programs that could be adapted for support for our Care Partners. We don’t need to reinvent programs or duplicate facilities. What we do need to do is make existing programs accessible, whether by adding recreational therapists or volunteers. If provided with adequate resources, these organization could keep those with early onset actively involved in their community.
- Every person, EOD notwithstanding, needs to have purpose. Keeping Care Partners active in community by involving them in supported volunteer work allows them to feel a sense of contribution and that they continue to provide value to others.
- The same may be said of continued employment in a capacity that recognizes they have a great deal to offer. Education and encouragement is needed for employers to consider how employees diagnosed with EOD might continue to work with modified duties. Although they have their issues, something like SIS assessments might be helpful.
- Those not able to be employed have a new job: staying well – physically, spiritually, and emotionally.
LONG TERM CARE
- The issues identified on the agenda were: that the majority of long term care facilities are not in the position to deal with younger people who have dementia and are still physically very active.
- The first point made regarding long term care was that better home care would enable us to keep our Care Partners home longer!
- While there is an extreme shortage of Long Term Care (LTC) beds in the province, individuals admitted to assisted living who subsequently need “more care,” are then charged and must pay privately for that care.
- Assessing individuals with dementia for admission to assisted living facilities rather than to more appropriate long term care (LMC) appears to have a profit-incentive. This raises two vital advocacy needs:
- Advocating for greatly increasing capacity in LTC facilities, and
- Challenging the criteria on which our Care Partners are assessed for facility care.
- To adequately meet the needs of dementia residents – regardless of age but particularly for our early-onset Care Partners, LTC facilities need a more home-like environment. There are some models for this like Centennial Centre in Ponoka (which, interestingly, on its webpage bills itself as being “not a traditional hospital”), and the Bethany Harvest Hills in Calgary. However, the majority of LTC facilities are traditional institutions with locked wards and heavy use of medications.
- Home-like LTC
- Encourages the presence of volunteers, children and other family members
- Encourages participation for clients in activities of a normal home life – meal preparation, laundry, crafts and hobbies, etc.
- Has in house or regularly visiting pets
- Avoids unnecessary medical interventions and does not use physical restraints
- Care Givers are part of the health care team (family care councils) – no decisions are made concerning a client’s care without the Care Givers’ participation and approval.
- Has consistent staffing
- Other suggestions made in discussion included
- Lobbying for establishment of an INDEPENDENT advocate/Ombudsman for Care Partner families that has same-day availability and does not report either directly or indirectly to the Minister of Health.
- The progressive nature of dementia highlights a need for regular reassessment of clients in care to insure that the funding allocated for them is appropriate for their needed level of care.
DIAGNOSES AND MEDICAL SUPPORT
- The issues identified on the agenda were: getting a diagnosis is made difficult by the many physicians who refuse to consider dementia even as a working diagnosis because the client is “too young,” and so decline to refer to specialists for further testing, resulting in long delays and frustration before an actual diagnosis of EOD is finally made.
- Better training for general practitioners (beginning with training of medical students and information for the primary care networks) is needed for:
- Awareness that Alzheimers and various other dementias are not exclusive to the elderly.
- Knowledge of what kind of testing is required for a diagnosis, and where/whom to refer to. There is neuro-psychological testing covered by Alberta Health Care and one does not need to be a senior to access it – one simply needs a general practitioner aware that he can refer there. It’s just wrong that individuals are paying $5-6,000 for private neuro-psychological testing because their referring physician didn’t even know it was available as an insured service.
- Consistent support referrals – information SHARED between doctors and testing services concerning where to send clients they diagnose with EOD for
- Emotional support and education (Alzheimer’s Society, ASANT, EODA, various websites)
- Ongoing support; how to access homecare and self-managed care, support groups, etc.
- The drugs most commonly used to treat dementia don’t work for everyone. When they work, they can work well, but they often don’t work at all which is why Alberta Health and Wellness refuses to include them on their lists of drugs approved for insurance coverage. For some drugs, a letter/form from your doctor to Alberta Health and Wellness can result in insurance covering your costs.
BILL’S MEDIA TRAINING
Bill Moore Kilgannon, Executive Director of Public Interest Alberta led us through a bit of media training/awareness. His talking points included:
- Always begin by asking, “What are the flaws and what are the fixes?” Advocacy is identifying what we need to see happen. It is not about every single individual needing to fight the same fight over and over.
- Identify individuals that can be approached – by letter, by phone or by meeting. Leslie Myles is the head of Dementia Care for Calgary. Who is the head of Home Care. Do they have a mandate?
- If you have something to say, try staging it as an event which will draw media coverage.
- If you are approached by a reporter to comment on something, RESPOND AS SOON AS POSSIBLE. Then interview the interviewer first:
- What do you know about this issue?
- Who have you already spoken to and what did they say?
- If you sent background information in advance, ask them if they have read it.
- Ask what their deadline is for filing the story – then request a short time (15-45minutes) to get back to them. This gives you opportunity to compose your thoughts and not be responding ‘off the cuff.’
- Be aware that, as in any profession, when it comes to reporters there are the ‘good,’ the ‘bad,’ and the ‘ugly.’
- The good will have background and related information, ask pertinent questions and write about your responses accurately.
- The bad may lazy and not be prepared with good questions, expecting instead that you will feed them information.
- The ugly may have an agenda of their own, may ask questions off topic or attempt to blindside you with information.
- BE AWARE AND PREPARED: know your facts (never guess!), know your key talking points, and be prepared to bring the conversation back to the subject if need be.
- “Well, that is not really the point we’re trying to make here.”
- “I’d like to bring this back to the key issue…”
- We then spent time doing a variety of role-play exercises on getting and managing media coverage for particular issues.
- Bill also mentioned written communications strategies
- Letters to the Editor: short, succinct responses to a recently published article
- Op-Ed articles: 700-800 words with facts and information (not just opinion) and perhaps including links or related postings.
- Television is the most widely accessed form of information. Figure out how to get your message out on TV!
- With thanks for practical and financial support from the Alzheimer’s Society of Alberta (ASANT) and for great organizational contributions by Bernie Travis.
- Persons with Development Disabilities (PDD) which has worked hard for the inclusion of PDD individuals in the workplace, uses SIS: The Supports Intensity Scale (SIS) is specifically designed to measure the level of practical supports required by persons with intellectual disabilities… The scale and subscales measure 57 life activities based on 7 areas of competence (home living, community living, life long learning, employment, health and safely, social integration and advocacy.) In addition it tests 15 medical and 13 behavioural conditions. Results are reported with an overall support needs score and a percentile ranking of a person’s needs based on national field test data (normed.)
- When behaviours fall outside facilities’ scope of care or ability to manage, Care Givers are being told to take their Care Partner to emergency. Sometimes a facility will just ship them there in an ambulance. If the facility reports aggressive behavior the person can be commited them to psychiatric care for 30 days. The Care Giver’s permission is not required to do this. The fact the caregiver/spouse has Power of Attorney/is named in Personal Directive is irrelevant. The medical analysis takes priority. Then, when it’s clear that they need LTC and none is available, they end up occupying active care beds in hospital and being labeled “bed blockers!”
- One such place is the Seniors’ Health Clinic at the Rockyview General Hospital.